This afternoon we picked up Tahlia's ashes.... Our lives have changed forever .... Christmas will never be the same again

 I just needed to add that little Willow passed away earlier this morning at the Children’s Hospital.  Susan K had organised for Alan and Peter and Jodi, our nurse on that last day, to meet with us in the social work offices at 9am to go over what had happened and answer any of our questions.

We arrived early, around 8:30am and went outside into the gardens to wait.  After about 5 minutes I noticed Tanya, Cody’s mother, walking across the grounds with her husband and two little boys.  She saw me and they all came over and she gave us a big hug and started to cry.  We talked for a couple of minutes and then she said something along the lines of “it’s just so sad about Willow”.  Scott and I looked at her blankly for a second and then realised what she was saying.  She too then realised we didn’t know what had happened and apologised.  We said that we were here for a meeting and she told us that they had been told in Ronald McDonald House this morning that Willow had passed away.  Scott and I were both blown away.  I couldn’t believe it.  I truly believed that Willow would get through it.  She had been on Edgar Stephens since the day before Tahlia passed away and had gotten quite sick again a couple of weeks ago.  Kate and Will had a terrible time getting the nursing staff to take them seriously that she was really sick and had to practically stamp their feet to get her taken back to ICU.  It was then discovered she had another virus and was put in an isolation room.  She then apparently suffered a number of cardiac arrests and was intubated last Sunday (which I didn’t know).  I got a text from Kate on Thursday night saying that they had turned off the muscle relaxant and that she was stable and was opening her eyes.  She then suffered another massive cardiac arrest yesterday morning and after an hour of trying to resuscitate her, she died in Kate’s arms.  I am so devastated for them.  It’s so unfair!  Kate and Will were just like us, totally devoted parents – so why do we have to lose our children when they are so loved.  It just doesn’t make sense. 

 We left Tanya shortly after and went to the social workers’ office.  While we were waiting, Will walked by and saw us and came in. We all hugged and cried and we told him how incredibly sorry we were and said if it was OK we would come up and see Kate and him after our meeting.  He said that would be good.

 Susan came out then and told us they were ready for us, so we followed her into a meeting room where Peter, Alan and Jodi were all sitting.  After hugs from Peter and Jodi and a handshake from Alan, we all sat down.  Both doctors were visibly upset.  Peter began by going over what had happened in theatre on the 17th and Alan included his own thoughts.  Basically they told us that when they went to remove the tube (3.5mm according to Alan) the repair totally collapsed and although she was taking in some air, she couldn’t expel any CO2.  They tried to reopen the airway but they couldn’t and she passed away without knowing anything.  It looks like the high pressures they had to use on the ventilator were what was keeping the airway open and once there wasn’t any pressure to keep it open, it collapsed.  They don’t know if it would have made any difference leaving the procedure for another week or whether it still would have collapsed.  That is something we will now never know.  Alan wanted to change the tube as soon as possible because the smaller tubes clog up too easily and they thought that a larger tube (4.5mm) would allow for a better air intake.  He was also concerned that there may have been some damage to her vocal chords.  They really had no idea that what happened would happen.  Peter was in theatre with her when it happened, so that is of some comfort, at least someone was with her that truly cared about her.  Alan reiterated the fact that on the first day when they did the initial surgery how surprised they were with how small her trachea actually was.  So she did in fact need the surgery and perhaps if we had left it until a later stage she could have been in a lot more trouble and would not have died peacefully.  I guess that helps a little bit with my guilt of taking her in in the first place.  It would have been even more awful for her if it had happened at home or somewhere else.  Because she had been so used to existing on perhaps 70% of her air intake, it made it harder to tell when anything was going wrong until the last possible moment.  It only took a slight change in her airway to knock her over.  I guess it is of some consolation, but it still doesn’t change the fact of what happened. 

 Jodi did remind me though that she was happy and blowing kisses on the morning before she went into theatre and that when I went around with her and said goodbye that she smiled a little smile and nodded her head.  Jodi said that she could tell that Tahlia felt totally loved and secure and that you could see that in the way that she responded to both Scott and I.  She knew we would be waiting for her and she wasn’t scared.  Oh God, I hope that that was true.  I still feel so guilty that I should have pushed more to go into theatre with her like I had in the past.  I just felt that day that it was just a simple procedure and that nothing was going to go wrong.  I just wish I could have been able to say goodbye properly.  Alan said that everywhere he looks he sees Tahlia and even sees Scott sometimes when he sees a man go by.  He said that he would never forget her and that he would always remember her when he performed future surgeries.  Hopefully they will learn something from what happened and do things a bit different in the future.  Peter also said that he didn’t want to lose contact and would talk to us again in a couple of weeks.  They both held back tears and I know how much they cared about her and about us. But I have to say that most of what they said in the meeting was still a bit of a blur as the fog of grief for both Tahlia and Willow was pretty thick.

 After the meeting was over, Susan rang Kate and Will’s room to see if it was OK for us to come up.  They wanted to see us, so we went back up to ICU.  It was so hard to go back in there.  Thankfully Willow wasn’t in the same room they put Tahlia in as she was already in a private room.  Kate met us in the doorway and I just gave her a big hug and told her how sorry I was while she cried.  We then went into the room and Will was sitting on Willow’s bed holding her in his arms.  She was wrapped in the pink blanket we had given them when Willow had her pacemaker put in.  It brought back so many memories, but I truly just felt so sad for them both.  Kate took Willow from Will and sat down in a chair and I sat beside her.  We all agree that Willow and Tahlia are now playing together and that they are looking after each other.  Maybe meeting each other in hospital was meant to be so we can help each other get through these dark days together.  We stayed for about half an hour and then I thought it was time for us to go to leave them to be with Willow for the last time. I know for us, that the time just went too quickly and they needed time to be with her on their own.

 As we walked out, Dr Gillies and Dr Rino came up and gave us both a hug.  Scott was shaking pretty hard by then and Dr Gillies realised that being in ICU was too hard and walked with us to the doors and let us out.  We just sat in the ICU waiting room for a few minutes and cried and then we left the hospital and went home.   We were feeling pretty emotionally exhausted and just had a quiet afternoon.

 I don’t know why these things happen and I don’t think I ever will.  I hope that we will be able to stay in touch with Kate and Will.  We have all experienced so much together and will be tied together through our daughters always.  Alison Lovegrove once told me that she had told reporters that being in ICU was like living in a war zone and I expanded that to saying like it felt like what it must have been like to dodge bombs in the war, never knowing when one might hit you.  Unfortunately, we were both hit by the worst bombs imaginable.  I just hope that in time we all survive them.

Today was one of the saddest (apart from last Thursday) and most beautiful days of my life.  We all got ready for the service at Revesby which was to start at 10am with a viewing and then the service itself would start at 11am.  It was just a small service in a small chapel for immediate family.  Mum and dad, Di, Lee and Wade, Aunty Carolyn, Wendy and David, Aunty Dorothy and Uncle Bill, Susan, Andrew and Louise, as well as Anne and Greg. 

 Before all the relatives arrived though, it was just us and mum and dad, Di, Lee and Wade and Wendy and David and we were able to just be with Tahlia for the last time.  She looked so much like she was just sleeping and she looked beautiful.  She was wearing the beautiful pink fairy dress that mum and dad bought her earlier in the year and which she is featured wearing on the cover of the service booklet that Di made.  She also wore the beautiful shoes that Di had brought her back from Hawaii which were covered in pretty pink flowers and which had flashing little lights when you moved your feet.  Because she was so close to being toilet trained before we went into hospital, Jean had bought her some pretty little underpants, so I also included a pair to put on her that had the word “princess” embroidered on them – she was wearing them.  We also included in the casket her fairy wings that I had bought her, a beautiful fairy wand from mum and dad and Scott had bought her a beautiful silver crown shaped pendant on a silver chain for Christmas which he put around her neck at the service.  Scott also placed the book “Kisses for Daddy” in with her and I put in the book “Guess How Much I Love You”.  She was also holding her little Kaloo bunny rabbit that I bought her when she was a baby and which always sat in her bed with her.

 Before everyone else arrived we had a brief baptism ceremony that Rhonda conducted.  Because of her illness and also because we could never get everybody together at the one time, we had never gotten around to having her christened.  I felt really bad about that and had discussed it with Rhonda when she came around on the weekend.  I felt much better after she was baptised and felt a little more comforted knowing that we had finally done it.  After the short ceremony, everyone went out to get a cup of tea and Scott and I stayed with Tahlia for another 15 minutes or so to say our final goodbyes.  It was so hard – how on earth do you say goodbye and let go of something so precious – someone that just consumed our whole world.  I don’t think we’ll ever be able to.

 Too soon it was time to leave the room while they placed the lid on the casket so that the ceremony could begin.  It was a beautiful ceremony and thankfully it was all captured on dvd.  I didn’t, when first asked if we would like it filmed, think that I would ever want to watch it or really think it the right thing to do, but now I am so glad we did.  We now have all the words and the music forever so we will never forget it.  Chrissy, who unfortunately couldn’t be there (and it was totally understandable as she has Harrison and Lauren to look after), wrote the most beautiful speech about Tahlia and how she was feeling, which Sandra, the other Chaplain read out.  It was very special.  Di also wrote and read out a beautiful poem she had written about Tahlia.  She is so talented.  It was incredibly beautiful.

 After the ceremony, we all went outside (to the carpark, which I was a bit disgusted about – I thought they would have a small garden but they didn’t) to let off 19 pink balloons.  The sky had looked very dark and cloudy and earlier but it had turned incredibly hot outside and the sky was bright blue. It was amazing!  As they drifted up into the sky they actually formed the shape of a heart and then what looked like a butterfly!  I thought I must have been seeing things, but a number of people saw it happen, including the director of the chapel, who said she’d never seen anything like it before.  She said that usually balloons just scatter everywhere, not float up together and in a formation.  I didn’t notice, but was told later by Susan and Di (I think), that two balloons separated themselves from the bunch and flew straight upwards together (could that have signified the twin I lost when I was about 8 weeks pregnant with Tahlia?).  Another strange thing that happened was that the 3 men who worked at Olsens, one Scott had had spoken to on the phone and two that were working today, were named Scott, David and Paul!  And there was a plaque on the side of the funeral car that said “Hillier” – Jean’s maiden name! Too many coincidences!

 After the balloons had all been released we went back to our house.  Dorothy and Bill and Susan, Andrew and Louise didn’t come back which I didn’t think they would.  It would have been too hard for them all to come back to the hospital for the memorial after having lost Brianna there 13 years before and I really appreciated them making the effort to come to the service.  I know it brought back a lot of awful memories for them all.

 When we got back home Jean went to the bathroom and fell over into the shower.  Luckily the glass door broke her fall, but the door broke off and luckily it didn’t break or it could have been a truly awful situation.  Luckily Anne and Aunty Carolyn were here, both being nurses, and were able to get her up and back into the wheel chair.  She said she wasn’t hurt, but I was sure she must have badly bruised herself.  Thankfully she was alright and was able to move enough to get back into the car after a cup of tea.

 The Memorial was scheduled for 3:15pm as the function room was supposed to be used until 3:00pm.  Luckily it was ready to use when we got there so Di and her friends, Kristen, Leila and a couple of others, were able to start setting everything up, but they still ran out of time and were still setting up as people arrived.  Lee had ordered 100 pink balloons and was busily untangling them and decorating the back of the room.  We didn’t know how many people to expect.  We thought a few of the nurses would attend and maybe a couple of doctors and some of our friends.  We were really overwhelmed however when the room started to fill up and although I’m sure exactly how many people were there, there must have been over 150 people.  Many of Scott’s work colleagues, past and present, came, including David Jones, Sam Gulloto, John & Kerry Reason, Steven & Margaret Stewart, John & Leonie Westneat, Kevin Dally & wife, the owner of AirRoad Tim Paine and the MD Malcom, Wendy Westbrook (HR Manager), and quite a few others from AirRoad, and quite a few others.  Friends of mum and dads - Wendy and Terry, Annette and David and a couple of others; friends of Di’s – Lisa, Anita, Heather and a few others; Dave and Pippa – Wade’s friends; and friend’s of mine – Vinette & Darin, Jane & Nick, Janine, Kim, Grant & Tamara, Carol Smith, Cathy Smeeton and Gail Hill.  Then about 20 nurses arrived in single file – including Jodi, Jo, Sharron & her daughter Bec, Kirby, Amy, Jennifer and Catherine, to name a few.  Sue Trapani and Susan K, the social worker came as did Anna and Tracey from Physio as well as Lisa from OT.  Dr Gillies and Dr Rino were also there and I was told afterwards that Dr Georgie from ENT was also there.  As were Gabby & Karen from Edgar Stephens. And of course Kate and Will. Tahlia’s GP, Dr Anne Marie Christie also came.  Brad, the wonderful Nurse Practitioner, helped organise the chairs, at one point asking everyone to move their chairs forward so they could fit in more, and there still wasn’t enough room for everyone – apparently they were standing 5 rows deep at the back and most of the nurses were standing off to the side.  Unfortunately I can’t remember everyone, but was told afterwards that theatre staff and other staff also attended.  It was incredible!  Janine took some photos of the day, so I will hopefully add to the list when I see the photos.

 Once everyone was finally seated, Rhonda started the service.  It was beautiful and everyone was moved.  Peter Cooper made a speech, as did Brad and they were heartfelt and incredibly special.  Scott wanted to say a few words, even though he was feeling terribly emotional, and thanked everyone.  I was going to stay sitting but just after he stood up to talk I felt the urge to get up and stand beside him.  I wasn’t sure if I was going to say anything, but in the end I felt like I had to thank everyone for their support.  I can’t remember what I said, but I do remember looking around the room and seeing wall to wall to people.  I felt incredibly humbled and proud of being Tahlia’s mum.  She had not had the chance to meet many of the people in the room because we had tried so hard to keep her healthy and well and it saddened me terribly that so few people actually knew her.  By the end of the service however, I felt like everyone walked away feeling as though they knew her. 

Most people aren’t remembered by so many in their lives and Tahlia touched so many in her short life.  We played Wade’s DVD again and again, it helped everyone to feel as though knew her.  Unfortunately the sound system wasn’t working so the musical impact wasn’t as great as it could have been, but it was still beautiful.  Rhonda basically reiterated the same service as earlier in the morning, so the words and prayers were pretty much the same, so even though the memorial wasn’t recorded at least we can remember what was said from the earlier service DVD.  Chrissy’s speech was read out again by Sandra, Wade read a prayer from the earlier service and Di read out her poem again.  I was so proud and humbled by their support.

Once the service was over – it took just over an hour – Wendy Westbrook, HR Manager of AirRoad, (who has been just lovely and incredibly supportive), handed Scott and I a box filled with butterflies, which was a present from AirRoad.  We then opened the doors of the function room which opened out onto the Japanese Gardens and released them from their box.  They flew up into the giant Willow Tree and apparently (I didn’t realise it at the time but Wendy W. told me later)  one landed on Scott and another on my dress. It was a beautiful way to finish the service.  The song “Butterfly Kisses” played in the background.  We then made our way around all the people thanking them for their support.  Kristen had made a beautiful pink punch and there were cupcakes with flowers on the top and some iced with the “Dora” character on the top, finger sandwiches and Leila had made heart shaped ham sandwiches like I had made for Tahlia for her birthday.  Di and her friends had certainly gone to a lot of effort.  There were also heaps of beautiful flowers (we had already received about a 10 beautiful flower arrangements at home) that people had brought and someone even made a beautiful set of butterfly wings and had beaded Tahlia’s name on to it.  Unfortunately I do not know who made it and feel bad that I can’t thank her.  I saw her walk in with it but I didn’t know who she was.

 After all the guests had left, we packed up. Scott and I had asked Lee and Di to wrap up all of Tahlia’s Christmas presents a few days before and we had brought them all with us to the hospital to be distributed amongst the little girls still in hospital.  Janine suggested that we take all the presents to her office and she would distribute them in the morning.  So between the two of us we managed to carry two huge bags of presents to Janine’s office and then she walked with me back to our car.

 It was an incredibly humbling and emotional day.  I miss Tahlia more than words can ever express, but I also felt so proud to be her mother and know that so many people’s lives were changed because of her.  So many parents said to us that they would think twice before yelling at their children again.  She changed my life and I know I am a better person because of her.  I cannot imagine going on without her, but somehow I will – because I want her to be proud of me and she deserves to have her short little life celebrated and remembered forever.  I am so angry and so incredibly sad that I will not see her grow up into the amazing woman that I know she would have been. To not be able to kiss or cuddle her ever again just tears me apart.  But I would do it all again because to have never had known her and to have never known the depths of love that she has shown and given me, would be even worse.  I am so blessed to have had her in my life and she will always be a part of me – in my heart and in my soul – forever.

I will love you forever my darling girl.  Goodbye for now.  I know I will see you again some day.  Just remember –

I love you this much .......................................................... And the whole world

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

These few days are a bit of a blur.    We got in contact with the Chaplains at the hospital and asked if one of them would officiate at Tahlia’s funeral.  We had also asked Susan K, if it were possible to have a service for Tahlia in the hospital gardens as we thought a lot of the staff may like to attend.  Apparently permission for this sort of thing has only ever been granted once before.  Thankfully, and I guess it shows how much Tahlia affected everyone, we were given permission to hold the service on Tuesday.  We were then very lucky to have Rhonda Daley, one of the hospital’s Chaplains agree to officiate both the private family service, which was at Olsens Chapel in Revesby and the subsequent Memorial service for everyone else at the hospital.

 Di, of course, volunteered to co-ordinate the Memorial service and then got busy putting together the most beautiful booklet full of Tahlia’s photos and organising all her friends to set up the day, including providing all the food and drink.  Lee organised and paid for about 100 balloons.  They were all amazing.  I am so lucky to have such a wonderful and supportive family!!  I know everyone was emotionally and physically exhausted after organising everything, and I appreciate it more than I can ever say.

 On Saturday we all went over to Castle Hill to buy Scott and I clothes to wear on Tuesday.  Scott bought a lovely pink shirt and tie (we had asked that everyone wear something pink, whether it just be a token ribbon or a piece of clothing) and I, after searching for about an hour, finally came back to the first dress I tried on.  I think I looked nice and I think Tahlia would have approved.  While we were in the shopping centre, my wonderful family also bought me a beautiful gold locket and chain so I could put Tahlia’s photo in it. (It felt very comforting once I got her photos in and was able to wear it when Di brought it back the next day).  It was very emotional and exhausting for both Scott and I to be in the shopping centre.  Especially as it was so close to Christmas and there were so many happy families busy with their Christmas shopping all around us.  We just had to walk around with our heads down in order to get through it.

 On Saturday night, after working all day, Rhonda came to our home to discuss the arrangements and find out more about Tahlia.  She was absolutely beautiful.  We could not have asked for or hoped for someone more special to honour Tahlia.  She stayed for a couple of hours and let us laugh and cry and show her photos of our beautiful girl.  Wade had put together the most amazing dvd collage of Tahlia for showing at the services and we showed Rhonda that too.  By the time she left she felt she knew Tahlia and was able to put together a service that would reflect our beliefs and honour our little girl.  She put it well and totally won me over when she said that she didn’t believe in religion, she believes in God.  I thought that was really well said.

 On Sunday afternoon, Rhonda and Sandy, another one of the chaplains, came over to the house to confirm all the music and prayers etc we wanted.  They are so incredibly caring.  I am so glad that they will be with us on Tuesday.

 Mum and dad drove home on Monday to get some more clothes.  While they were there mum was also able to get an appointment to have her eyes done.  When she drove down town, she had to stop at a roundabout and right in front of her was a car with the numberplate PL 9966.  Was that some kind of omen?  Could that mean Paul 9th Sept 1966? My birthday? 

 Another strange thing happened with Di and Lee on Sunday.  They went to Waringah Mall and were just standing there when a little girl, about Tahlia’s age or a little older, came running up and stopped in front of Di and looked up at her and smiled.  Suddenly her father came running up after her and called out “Tahlia”!  They were both shocked.  Again, another omen?  I just wish something would happen to me like that.

 (The weather was predicted to be showering and awful on Tuesday so we were given permission to hold the memorial in the Hospital’s function room which opened up onto the Japanese Gardens which took away a little of bit of the stress wondering what we would do if we were having it outside and it started to rain.)

We had been told to ring the Corona’s Office around 10am for their decision and thank goodness the Corona had ruled in our favour and we didn’t have to have her taken to Glebe.  There would be no autopsy, the events of yesterday were clear and there was nothing to be gained by going to Glebe.  We were so relieved.  We also chose a funeral home – Olsens Funerals.  They seemed to specialise in children’s funerals and although they were located at Sutherland, they were able to perform a service anywhere.

We then went back to the hospital to pick up the rest of my things from the hostel and also to put some pyjamas on Tahlia.  Susan K and Sue T. met us in the foyer and we went to the hostel to collect Tahlia’s pyjamas first.  We then went back down to the Mortuary.  Sue explained that she would look a little different as after death the blood settles to the back.  All of the tubes had now been removed, but the side of her head and her ear and around her bottom and backs of her legs were a dark purple colour.  She still looked peaceful though, but she was so cold.  Scott and I both dressed her in the pyjamas that mum had bought her.  It was so hard to do it.  She was so stiff and cold and my heart was breaking every second.  It just didn’t seem real.  At least though she was dressed properly and wouldn’t have to be transported to the funeral home without any clothes on.  We stayed with her for a little while and said our goodbyes again.  It just about killed me to leave her again. 

 We then went up to Edgar Stephens Ward to see Kate and Will and Willow.  They had been such good friends to us and we had all been through so much together.  They were also devastated for us.  We had brought some of Tahlia’s Christmas presents for Willow and they were touched that we had done that.  We stayed and talked to them for about half an hour and then went back downstairs to the hostel to collect all my things and then went home.  Wendy arrived later that night so that was good for Scott to have someone close to him be there for him.

I don’t know how to write this – I am breaking into a million pieces.  We lost our precious little girl yesterday morning while she was in theatre.  We don’t know exactly what happened except that she went into theatre at 8:50am and sometime around 10:15am Dr Jacobe came and asked us to go with him.  Both Scott and I knew immediately that something had happened, but I truly was not prepared for them to say that she had gone.  I couldn’t help it, I just sank to the floor and couldn’t get up.   I think it was Louise, who helped me into the interview room where all the doctors were waiting to tell us they were sorry, they had done all they could but they couldn’t save her.  Our world disintegrated from that point on.

 Scott sent me a text around 6.30am saying “wakey wakey, she’s going in at 8:15am”.  I rushed to get dressed and raced back up to ICU.  Tahlia was awake.  Scott said that around 5:30am  Amanda and him had given her a sponge bath and Amanda had braided her hair into two braids.  We were told that Alan’s associate, Dr Simone, would be doing the LBO this morning and not Dr Cheng.  I thought that she may be a little less eager to exhubate as she had worked at GOSH in London with the team who do the trachea reconstructions over there and that she may in fact have a bit more experience than Dr Cheng, so I was happy that she was doing it today.   Now, after the fact, I wish Dr Cheng had been there instead.

 I walked with Jodi and Tahlia around to the theatre, but for some reason this time, they wouldn’t let me go into the theatre with her.  (I can’t remember anything about the few minutes before they took her away and I’m hoping that Jodi may remember and be able to tell me in the future).

 I remember walking back into the ward with Jodi and Scott said that Tahlia had held his finger and kept looking straight at him as she left the ward.  We settled down to wait and Scott had a couple of work calls and then Sue  came in for a chat.  Around 10:15am, Scott thought he saw her being wheeled back across the ramp.  We thought she’d be back any minute and then Sue got a page call on her pager.  She used the phone at Tahlia’s bed and we heard her say “yes, I’m here with them now”.  She had her back turned to us and she sort of slumped and took a breath before turning back to us. My stomach dropped to the floor and I called out to her was something wrong.  She didn’t hear me at first, which made me even more scared, so I asked her again if something was wrong.  She sort of blinked and then said no, it was a call about another patient. The feeling of relief was incredible!  Scott then went out into the corridor as it seemed to be taking a while to bring Tahlia back in and that’s when Dr Jacobe came up to him and asked him where I was.  Scott said I was in the room and Dr Jacobe told him to get me.  Scott asked if something was wrong and he answered “it’s not good”.  We both thought that there was another complication, but not for a minute did we ever think that we were about to hear the worst news of our lives.

 I remember seeing Dr Simone and Peter Cooper, amongst a number of others, standing in the interview room.  I vaguely recall hearing Peter say “I’m so sorry” and then seeing Scott almost fall.  I couldn’t go into the room, I just didn’t want to hear what they were saying – so I just sat down on the floor outside the room and started crying.  Louise, and maybe Jodi – I can’t remember who the other nurse was – helped me up and helped me into the room.  It was like being in the middle of a nightmare.  The next moments were a complete blur.  I can remember being told that her airway had collapsed and that there was nothing they could do and how sorry they were.  We were then told that she had been brought back to ICU and was in a room at the end of the corridor and did we want to see her.  Of course we did.

 We then walked to the end room in ICU to find our beautiful baby girl laid out on the bed and wrapped in a blue blanket.  I remember thinking, why is she wrapped in blue when everyone knows she should be in pink – stupid huh! She just looked like she was asleep.  She still had the catheter and all the tubes and lines in her and we were told that they couldn’t remove them yet as the NSW Coroner’s Office had to give permission to have them removed because as she’d died under general anaesthetic her death had to be reviewed by the Coroner.  At that point we really didn’t take that point in.  The pain was just too intense.  Scott just wanted to hold her so Millie, one of the nurses, picked her up and passed her over to him.  They were subsequently allowed to remove the NG (nasal gastric) tube from her nose, so we could see her face without the tapes.  Her poor little cheeks were red raw from removing the tapes.

 (Having to go into this particular room was twice as horrifying for Scott as it was for me.  Last May, when we were in ICU for nearly a month, Scott had a vision about the room where they took Tahlia.  On the first night we were there, we were taken into the middle room, halfway down the corridor as you walk into ICU.  The doctor on duty, Dr Lawrence, had difficulty trying to get a cannula into Tahlia’s arm.  He tried about 5 times before it finally worked, but in the meantime Scott stepped outside the room as he was finding it hard to watch.  As he stood outside the room, he witnessed two people walking out of the last room at the end of corridor.  He felt chills and suddenly saw us walking out of there looking devastated.  He told me about it when he came back into the room and I told him not to be silly or something.  When we came back in this time, he apparently told a couple of the nurses that if we had to move rooms for any reason, not to put us in the end room.  As it subsequently turned out – that was the room they placed Tahlia.)

 I really cannot recall clearly the sequence of events, but a short time later the anaesthetist and the ENT team came in.  Alan was just sobbing and saying how sorry he was.  I remember hearing the anaesthetist (I can’t remember her name) saying that they were all parents themselves and how sorry she was too.  I remember giving Alan a hug and saying it wasn’t his fault, but I just felt numb.  Here was Scott sitting next to me holding Tahlia and all these people were standing around us crying and saying sorry – it was so surreal.

 After they all left I told Scott that I wanted to hold Tahlia and he passed her over to me.  I really thought that my heart was going to stop and break.  My darling little girl was so still and cool and pale, it was, however, comforting to be able to just hold her.  Dr Jacobe came in and told us what would happen next – a police report would have to be filed and the Corona informed.  Apparently if a person dies under general anaesthetic they immediately come under the Corona’s control and an autopsy will have to be performed.   We didn’t immediately absorb the implications of this until later in the day.

 I tried to call Di, but she was out of range or something.  I knew mum and dad were going to be driving around delivering decoupage so I didn’t want to tell them while they were driving, so I thought I’d try Aunty Carol as I thought she may be able to tell them more gently. Unfortunately I couldn’t contact her either. Then I tried Wade and got him, however I didn’t know that he was actually in Coffs Harbour for work.  It was an awful phone call to make.  He apparently got on the next plane and came back. Next thing I know, Susan, my cousin, arrived.  I immediately assumed that somehow she knew what had happened, but then I realised that she couldn’t have and must have just come for a visit.  I couldn’t believe she had come today of all days – maybe it was a sixth sense, or maybe Brianna had somehow told her to come (Brianna was her beautiful daughter who tragically passed away when she was only 5 years old from a brain stem tumour).  She said that she’d been smelling the drugs that Brianna had been on while they were trying to treat her over the last few weeks.  They apparently had a quite distinctive smell.  We both think that Brianna must have been around and maybe she knew what was going to happen and was here to help Tahlia.  I want to believe that.

 Di arrived shortly afterwards – Wade had gotten hold of her – and Janine had also been told and was outside the room with Susan, the social worker.  Janine was wonderful.  She had seen what we had been going through over the past 2 months and we had become quite close again.  She was terribly upset herself but gave me a big hug and tried to comfort us as best she could and offered to go and wait for mum and dad and do anything else we needed. We were asked if we would be more comfortable sitting in another room so we moved back into the interview room where we were initially told the awful news.  At least it had softer lighting and comfortable leather chairs rather than the hospital room.  Mum and dad arrived and I thought dad was going to have a heart attack.  He looked so sick.  Thankfully he soon felt better but of course they were both terribly distressed.  Wade and Aunty Carolyn also came.

 We sat there, with Scott and I taking turns at holding Tahlia until around 3pm.  Then our world got even darker and more confusing!  Dr Jacobe came in with Susan., the social worker, and told us that one of us had to meet with the police and fill out a statement.  Scott somehow found the strength to do it and went out of the room to do it.   When he came back in a while later, the policeman was with him.  He apparently had to “identify” Tahlia.  The policeman couldn’t get out of the room quick enough.  We were then told that Tahlia would have to be transferred to Glebe, to the Corona’s office for an autopsy. There was no way we were going to allow that.  We had said that we would allow the doctors here to take her trachea and do whatever they had to do so that they could perhaps find out exactly what went wrong and hopefully help another child in the future.  We were told that the Childrens’ Hospital was not authorised to do a partial autopsy and that if we wanted that to happen it could only happen at Glebe.  We were then caught between a rock and a hard place.  We wanted to be able to help future children, but Tahlia had already been through so much that we didn’t want her being cut open again and we certainly didn’t want her lying at Glebe amongst strangers and goodness knows who else and of course we didn’t want her lying there over Christmas by herself.  The only options, we were told, were to lodge a plea with the Corona’s Office, by fax, objecting to an autopsy and requesting that the Corona’s Office not be involved.  The Corona’s Office could, however, refuse our objection – apparently once Tahlia died, we lost all parental rights!!  We were furious.  We were not going to let that happen to Tahlia without a fight.  Susan K asked us if we wanted to write the letter or she could and we could sign it.  We asked her to do it as it was just too hard for us, so she wrote it, Scott signed it, and she faxed it off.  Unfortunately we would have to wait until the next morning to find out what the Corona’s answer would be. 

 Then, to top everything off, we had to give Tahlia up to be taken to the mortuary.  Changes happen in the body after death and so we weren’t able to stay with her any longer.  My mind just couldn’t comprehend letting her go – we hadn’t been apart in 2 and a half years!  We were then told that we weren’t allowed to walk down to the mortuary with her!  Susan K . told us that the policeman had said it wasn’t allowed  - of course we weren’t going to put up with that.  They made us feel as if we had done something wrong and were responsible for her death – it was just awful.  Scott went outside to talk to the policeman with Wade.  I thought they both might have hit him if he continued to refuse!  After a few very long minutes, Scott and Wade came back in and said they had sorted it out.  The policeman backed down and said it was a hospital rule, Susan K said that that wasn’t true.  In the end we were allowed to walk down with her.  There should never have been any issue in the first place!

 Scott took Tahlia from me and together with Susan, Sue  and Brad, he carried Tahlia downstairs to the Mortuary.  We had to walk through the Chinese Gardens and I remember it being so hot and muggy.  When we got to the doorway into the mortuary area no-one’s key cards would work to let us in.  We just all stood there waiting for someone to come out and let us in.  It was very very surreal.  Finally someone came and we walked down the corridor to the mortuary.  It was a small room with chairs with a door leading off it into a smaller room with a high bed draped in bright colours with animals on it.  There Tahlia was laid down on the pillow and we had to say to goodbye.  It was the most awful feeling of our lives, to just leave her there.  She looked like she was just asleep, but she was so cold and pale.  Susan, Brad and Sue were all lovely and tried to comfort us as best they could, but it just wasn’t real.

 After saying goodbye, we had to go back up to ICU to collect all our things.  Mum and Dad, Di and Wade, all helped. It was so hard to pick up everything.  As Scott said, we arrived packed up neatly with suitcases and left with everything in plastic bags on a trolley.  All the staff were devastated and lots of nurses came up to us crying.  Brad, Marika, Leanne and Jodi and a couple of others came in to say their goodbyes while we were in the interview room as well as Dr Gillies and Dr Rino.  Nobody ever expected this to happen.  The amount of love and support from all of the ICU staff was pretty overwhelming.  Tahlia had certainly touched their hearts.  Amanda, the nurse on last night had commented on a teddy bear Scott had bought downstairs in the volunteers gift shop, so we asked if the teddy could be kept and given to her.  We also gave Jodi, who had been so wonderful in helping us today, another teddy bear of Tahlia’s.  We hoped that that would be a small thank you for their help and also a reminder of Tahlia in the future.

 We then had to walk out of the hospital.  It was a beautiful hot day and the whole lobby was filled with cut out red hearts in honour of heart week as well as tinsel and a huge Christmas tree.  Again, it was just so surreal.  Our world was ending, yet people were still going about their lives, looking forward to Christmas and just living.  The rest of the evening is still a bit of a blur.  Mum and dad and Di and Wade stayed and Lee also managed to get on a flight and flew over.  Di and Lee went back to Di’s place and mum and dad stayed with us. 

 (The weather was very strange today.  Around the time Tahlia passed away, a big storm came through and it was pouring, by the afternoon the sun came out and it was sunny again)

I went to bed around 2am and when I woke in the morning I had the following text from Scott at 6:36am – “Tahlia is awake . . . eyes are closed but she is nodding yes and no . . . she has just had her teeth cleaned and spat out the foam by herself . . . she is aware that I am here!!” 

At 7:55am I received another text – “She is very much alert . . . yes and no to questions . . . fingers moving . . .” – they were the most wonderful words I have ever read!    The hostel had organised a free 10 minute massage to those people living in the hostel this morning and Scott had convinced to me have one, so I had put my name down for 9:15am.  I was very tempted to cancel it and rush back up to Tahlia, but I thought it was nice for Scott to have some time with her so I had the massage (which was OK, but really much too gentle and light) and grabbed some brekky.  When I got upstairs Tahlia was wide awake with her eyes wide open.  Scott told her that mummy was here and she smiled and then he told her to blow me a kiss and she puckered up her little mouth to make a kissing action!  Of course the tears were streaming down my face by this point!  (Scott wasn’t far behind too!!)  I couldn’t believe it.  She can understand everything you say to her and is moving her head in an appropriate yes or no gesture in answer to a question.  She really is quite remarkable!!  Everyone of course is really pleased and of course word got around quickly and we had quite a few visitors from the nurses pop their head in to see how she was

 Scott said that Dr Gillies had been in the morning rounds and had announced that he would not be allowing to Alan to do an LBO today. We are both pretty relieved.  I think she still needs more time to heal.  After lunch time Alan came back to check on Tahlia and told Scott and I and Jodi, our nurse, that he would be taking her back to theatre tomorrow!  Luckily Stephen Jacobe and Dr Elaine were there and they asked him some questions and took him off quietly to have a word.  Dr Elaine told him that her pressures on the respirator were still too high and that she certainly wouldn’t want her to be extubated just yet.  He is not supposed to just come and tell us what he is planning without checking it first with the PICU doctors!  So, after consultation with Dr Jacobe,  the plan is that Dr Cheng will take her into theatre tomorrow morning and have a look down, move and replace the tube with a new one if necessary (4.5mm instead of 4mm) and check her vocal cords for any damage. They will not be exhubating!  However if her respiratory pressures reduce enough by the weekend they may decide to attempt exhubation on Monday.  I so hope they aren’t rushing this.  The ICU doctors are aware that Scott and I are concerned about moving too fast, so we have to trust that this is the right thing to do.  It will be pretty much 2 weeks by then with the tube down, so I suppose the timing is right.

 While Scott was at home feeding Honey and Moet, Aunty Carol popped in and stayed for a couple of hours.  It really was lovely to see her and she’d brought in some salad and chicken for us for lunch and then went downstairs to get me a coffee just before she left.  I was really touched by her doing that!  Scott got back around 3pm, just after she’d left.  He said that Honey was very sooky and seemed a bit depressed.  I hope that he doesn’t decide to get sick too! 

 Brad changed the dressing on the back of her head again this afternoon and Dr Jacobe saw it too and was happy with how it looks.  It’s still pretty awful, but it’s healing.

 Mum and dad arrived in the late afternoon and Tahlia was awake and smiled at mum, which of course, brought a huge smile to mum’s face.  It was so lovely to see them both and to share the good news of Tahlia’s waking up.  She has been awake on and off all day.  It has been hard for her to open her eyes for long but when she does for a few seconds you can see she is aware of all that is around her.  She was also giving all the nurses “kisses” which made everyone’s day and wanted to listen to Dora DVDs.  She is still not moving but I am so glad that her brain function appears normal again!  In the back of my mind I was scared that this time, because she was muscle relaxed again, that there may have been some damage.  Luckily there is nothing!

 She has had a bit of a temperature tonight, 38.6, so fingers crossed again that that doesn’t turn into anything nasty!  She doesn’t need that!!  It’s now nearly midnight and her temp is still the same.  The steroids have been turned off today so that may have caused the temperature spike too.

 It’s quite amazing living in here.  Every day a new patient gets brought in and within 24 hours they are either exhubated or moved on to the ward – and we stay here!  I got a text from Kate tonight saying that Willow was much better and that they could be getting discharged on Friday and going home on Monday!!  I truly hope so.  It would be wonderful for them to spend Willow’s first Christmas together at home.  She said she will come and see us before they go.  I will miss her.  I hope we can keep in touch. 

I slept until nearly 8:30am and didn’t get up to the room until just after 9:30am with brekky.  Scott said she’d been pretty good all night apart from the usual blood pressure ups and downs.  We were both feeling pretty anxious about the broncoscopy at midday.  I went round to Edgar Stephens ward to fill in some time and get a new string for Tahlia’s third heart beads necklace! (And also to drop off a magazine for Kate).  While I was there, I met a lady called Kim who runs “Heart Kids” an organisation for families with children that have undergone heart operations.  She was really lovely and concerned about Tahlia and said she’d drop off some information over the next few days.  I got back to the room around 11:30am and the anaesthetist, James (he looks like he’s just come back from the beach, but apparently is brilliant – he was there last Tuesday and looked after Tahlia while she was going the second or third emergency episode), was starting to set up as there were two anaesthetists present throughout the whole procedure just in case – she was also given a general anaesthetic anyway.  By about 12:15pm almost everyone was here, including  Peter Cooper, Dr Gillies, Dr Elle, Dr Simm, Brad, Ollie, Amy, and a few others.  Dr Gillies told Scott and I that he thought it would be better if we didn’t stay in the room while they did the procedure, so we waited in the corridor outside the room.  To everyone’s frustration, Alan was running late and so the procedure didn’t actually start until 12:50pm.  It was a very long hour!

 Sue stayed with us to keep us company and try to take our mind off what was going on I think.  I don’t know what we’d do without her sometimes! Around 2pm (it could have been a bit later, but I wasn’t really looking at the time) Peter came out and told us it had gone well and that everything looked good.  Alan would be the one to discuss the findings in more detail, but Peter appeared more confident and the Elle came out shortly after and reiterated the fact that everything appeared to be good.

 We finally were able to go back into the room and Alan explained that they had pulled the tube up 3cm so it was now sitting above the graft and not below it.  It was fixed and had shrunk slightly and looked like it was healing properly.  They spent a long time ensuring that the tube was in the right place so that it wouldn’t move. He then explained that they would turn off the vecuronium (muscle sedative) so that she would start to move and slowly wean down the sedatives to get her to start moving and breathing on her own.  She needs to do this to avoid further complications such as pneumonia and other problems.  He said that she would need to go back into theatre in the next couple of days to check the tube was right and if necessary replace it with a larger tube.  He would also check for infection and check that the vocal cords had not been damaged.  The longer the tube remains, the more chance there is of damaging the vocal cords.  If all was going to plan and she was able to breathe spontaneously, then there was the possibility of exhubtation on Friday!  Scott and I were a bit concerned about that, but after speaking to Elle and Johnathon GIllies afterwards, it looks highly unlikely that they will be taking her back to theatre for at least a few days.  I know Alan only wants to ensure that no other complications occur, but we trust the ICU team to pull back the reins and allow her some more time to heal before taking out the tube.  We will have to see what happens tomorrow, but at the moment, she shouldn’t be going back to theatre.

After everyone had left Amy, Lisa and Nicky gave her a wash, changed the sheets and turned her over to her side.  She doesn’t have to have her head hyper-extended any more and it can be moved from side to side – which will certainly relieve her pressure sore – however she cannot be allowed to move her head onto her chest, so a special neck brace is being made to ensure that that doesn’t happen.  Unfortunately the brace that was brought up was too big and had to be taken down to the sewing room to be altered but the staff in the sewing room went home before it was finished!  So we won’t be able to get it on her until the morning.  Amanda is very aware of this though so she will make sure that Tahlia’s head is kept in the right position.

 Brad also checked her head as she was being turned and removed the old comfeel bandage.  It looked pretty awful as he removed it, lots of infection and stuff, but underneath you can see it is starting to heal and had not gotten any worse after the week of lying on it.  He cleaned it and redressed it, putting a bandage around her head to keep the dressing in  place.  He will change the dressing again tomorrow afternoon. The area around the wound though doesn’t have any hair growing on it and is really quite large, but everyone has assured me that that area will grow back.  The wound area itself may not, but if necessary, she can have a graft done to replace the hair at a later stage.  This is something we can revisit in the future.  There are lot more important things to focus on at the moment.

 Scott went home to feed Honey and Moet around 3pm and got back around 6pm.  I then went downstairs to buy some dinner from the Bear Cafe and bumped into Peter on my way.  He admitted that he was happy with today’s procedure but noted that we are not out of the woods yet.  Her airway is now almost hourglass shaped and there is more narrowing in the centre than there was before.   The concern with this is that she may have trouble coughing and moving mucus through it.  This is something only time will tell as it needs to grow.  She may have to have it dilated again at some stage.  We just have to wait and see.  There is still a lot that can go wrong, the most urgent thing that she needs to do is start breathing on her own so that she can move the mucus around her lungs and airway.  I know that she can do this with all of our help and encouragement.  The next few weeks are going to probably get a lot harder than last time, although as she hasn’t had to contend with the after affects of a cardiac arrest, she should hopefully be a lot stronger.  I truly believe she will get through this.  I believe in her and I believe in us and I believe in the whole medical team that she has helping her to get her through this.  I may not have prayed a lot over the last decade or so, but I am putting a lot of faith in God right now to help her through this and I know a lot of people are also saying a prayer or two about her.  I hope He listens.

 The muscle relaxant was turned off at 3pm and as of 9pm she still hasn’t moved.  At 8:30pm Amanda turned her from her right side to her left side and she became hypertensive and her heart rate jumped from mid 90’s to high 130s and her blood pressure jumped from late 60s/early 70s to also the high 130s.  C02 rose from earl y 40s to 60s and oxygen dropped from 100 to 60s.  She also looked as though she had the hiccups as her tummy was moving in a jerky motion.  It was a bit scary!!!  Luckily it only lasted a few seconds, and Amanda gave her a bolus of morphine which calmed her right down.  She said it was normal, that when you come out of a sedated sleep it can be a bit scary and confusing, which is why everything went a bit haywire.  The extra bolus of morphine was just to keep her calm and not get agitated.  Catherine and Amanda then did a suction and got a little bit up, but not a lot.  Amanda has just tried another suction (9:30pm) and again, did not get much up.  She did however just tell me that Tahlia moved her tongue when she was doing her mouth care!!  So that is a start!   They are going to wean the morphine and medazalam (sedatives) by 10%, 6 hourly apart for the next few days so that she doesn’t go through withdrawals.  She should therefore be a lot more alert and awake in the next couple of days.  At least she is comfortable at the moment.  Her heart rate is currently 100, BP 78, C02 is 42 and oxygen is 100%.  These are all OK.  

It’s now 9:40pm and her heart rate is down to 95, BP 66 and C02 is 45, so we are heading in the right direction!  The next few days are going to be a bit stressful as she starts learning to breathe again on her own.  I hope and pray that this period goes well.  It’s so heartbreaking to know that she is going to have to go through all of the pain and anxiety again that she went through 6 weeks ago.  At least there is some comfort in the fact that I know she won’t remember it and that within a couple of weeks she will be making progress and putting the worst of it behind her. 

 10 minutes after writing this everything went a bit haywire for a about 30 seconds when Amanda and team turned her over onto her side. Her heart rate jumped to the high 130s as did her blood pressure and her oxygen levels dropped into the 60s as did her CO2 rise to the 60s!!  Luckily this didn’t last very long and Amanda gave her a bolus (one off) extra dose of morphine which settled her quickly.  Her heart rate dropped back to 93, BP 66 and Co2 45 within 10 minutes, so that was a lot better.  Amanda cleaned her mouth shortly after she settled and her tongue moved in her mouth.  There had been no other movement at this time except for that.

 At 11:30pm she started moving!! Just fingers and mouth, but definitely moving!  She also took 5 breaths intermittently on her own.

I woke up naturally about 8am and staggered out to have a shower, bought some brekky at Starbucks and then came upstairs.  Scott said that everything had been OK overnight apart from the ups and downs with her BP.  Mum and dad came in on their way back home and I gave her a copy of the photo of her and Tahlia taken a couple of weeks ago in a frame (that Di had kindly got me) for her birthday tomorrow as they won’t be back in Sydney until Wednesday.  Scott had chosen some lovely cards, so she was very happy and a bit teary!  After they left Reno and Elle came around.  They are both happy with Tahlia’s progress to date and Reno said that they would be looking at turning off the muscle relaxant probably tomorrow afternoon and see how she goes.  They will not rush anything but unfortunately they cannot leave her muscle relaxed forever as she will get pneumonia and other complications as her lungs can’t move any secretions on their own.  At the moment they are looking at Tuesday to see if the graft has taken.  That is going to be a very scary day.  From what I understand from Reno, Tahlia is the first person to have this kind of graft over an already existing repair.  We are all hoping and praying that this will work.

 Scott has gone home to feed Honey and Moet and he has promised to bring some Crispy Creme donuts back for Libby as she loves them (she is an excellent nurse and has been so kind and caring to us).  He is so good. The nurses are on a charity drive to help out two families who are finding it tough this Christmas (one is a single mum with two girls, and the other is a family with 4 boys and 1 girl) and have asked for things to go in a hamper for each family.  Louise – (she is one of the senior nurses.   She is so calm and comes across so knowledgeable that you feel incredibly reassured when she is around) said that most of the things donated have been for the children, so Scott said that he’d go and get a few things for the parents.  I love the way he thinks about other people and wants to help, its something we really do have in common.  It was funny tonight too, when the nurses were handing over I said to Scott that it was a bit like ‘Chinese Whispers”.  He looked at me and laughed and said that he had been thinking exactly the same thing! 

 Scott came back around 4pm with Crispy Cremes for everyone and 2 “pamper packs” for the mums in the charity drive and a “Lynx” Mens toiletry pack for the dad.  Di arrived around 4:30pm so we went down into the Chinese Gardens for a coffee for half an hour and as usual Di brought in dinner, so she helped me heat it up downstairs and brought it back up here.  She’d had a bit of a incident where her CO2 rose again to the 60s, which wasn’t good and her blood pressure dropped and heart rate rose.  They couldn’t suction anything either.  So Libby raised the pressure on the ventilator back to 20, as they had lowered the pressure earlier to 19 due to her CO2 levels getting better.  This made a big difference and her CO2 levels came back down again.

 It’s now 9:10pm and Christina is giving her the anti-fungal medication.  They are having a bit of trouble with the nebuliser working properly, but her heart rate is still only at 91, blood pressure is 79 and C02 is 39, which are all good stats.

 Its nearly 11pm and the nurses are preparing to do a roll.  I always feel so nervous when they do that! She is still doing well though.  Di brought her an eye mask from home today too.  While she is under the heat lamp, they have to cover her eyes.  In the past they have just used paper towel, so Di brought in this gorgeous pale pink eye mask that is doing a much better job! Louise tried to put some pressure stockings on Tahlia earlier this afternoon to try and stop any deep vein thrombosis in her legs, which can happen if you’re not using your legs for a while.  Unfortunately they don’t make them in the right size for children and the smallest size they had was too big.  She was only able to put on one as she still has a cannula in one foot, but it looked so cute.  It had to be rolled down at the top as it was too big, but she sort of looked like a Can Can Dancer with only one stocking!

  Unfortunately I didn’t get a photo before Dr Elle came in and said that they really were too loose and that it wouldn’t work as they need to be firmer.  It’s ridiculous that there are no things like for children.  Apparently they don’t make enough money out of manufacturing kid’s medical stuff.  They are going to put splints on her legs tomorrow to keep her legs straight, poor little thing.  She looks very cute at the moment lying on her back with one of her hands palm down and the other palm up, the sleeping mask on, and her legs wrapped together like a mermaid.  She looks like she’s lying in the spa waiting for her manicure and a facial!!

 It’s now 11pm and Dr Sabode is about to put a new, longer lasting cannular in because they took out the femeral line earlier that was in her groin which was being used for transporting antibiotics and he has also taken out the other cannular in her thumb that was put in on Tuesday.  Hopefully the new line will last longer and won’t need to be done again for a while.  One of the drugs she is being given is particular nasty in the veins as it is very thick.  They water it down as much as possible but it still collapses veins quite often.  The new line they are putting will allow this drug to be moved much better.   The new line went in well and her stats didn’t change in any way. 

We have our lovely nurse Amy on today.  She is from Adelaide and is just beautiful.  She has a very professional and knowledgeable aura around her but is also very soft and caring.  There has not been much change today which is good.  No sharp fluctuations in BP or Co2 or temperature, so we are pleased about that.

 Scott texted me this morning before I came back up after my sleep to say that the cardiac round had come through and that there were a cast of thousands.  When I came up we decided to have breakfast first before Scott gave me the latest update on what had been decided going forward.  Peter came up before we had had a chance to discuss it further so Scott told us both that Alan had also come around and said that he wanted to look at taking the tube out to have a look tomorrow.  I was a bit freaked out by that as I am so scared something could go wrong, especially if they do it at the bedside! Sue  had also come up, so both Peter & Sue said that they’d go and find out more about what was happening.

 Dr Gillies came in and advised that they were planning a meeting with all the powers that be today at 1pm and would make a plan going forward.

 Scott went home to feed Honey and Moet and Di arrived just after he left which worked out well as Dr Neil Ginsberg, our Pediatrician called to check on Tahlia, so I went outside to talk to him.  He was really lovely and reiterated that we had the best doctors/surgeons in Australia working on Tahlia.  After I had finished talking to him, I went around to Edgar Stephens Ward and collected some more of Tahlia’ Heart Beads before coming back.  I have now made 2 long necklaces and still have quite a few beads left!  I have even had to get another sheet to fill in! About 1:15pm Johnathon Gillies, Peter Cooper, Rita – the current Registrar, David Winlaw, Alan Cheng (on speaker phone) and our nurse Amy, all had a meeting together to plan the next step.

 Less than half an hour later, Amy came back and Dr Gillies came in and asked if I wanted to go into his office, where he would ring Scott at home and put him on speaker phone.  That sounded like a good plan to me as I was nervous I would forget something when I went to relay what happened at the meeting when Scott got back.  Dr Rita and Amy were also asked to join us.  Anyway, Dr Gillies got Scott on the phone and told us both the plan going forward. They are proposing to look down the tube using Peter’s fibreoptic broncoscope tomorrow at midday and move the tube 5mm to see what happens and then move it another 5mm until a maximum of 1cm.  If everything looks OK, then they will turn off the muscle relaxant over the next couple of days and the pressures on the ventilator with the intention of going back into theatre early next week to check again with the possibility of exhubation.  This is such an incredibly scary journey for both Scott and I.  I have felt particularly emotional today, it’s as though there is a terrible heaviness in the pit of your stomach that you just want to get rid of but wont come out.  I am terrified of them waking her up, yet I know that the dangers of leaving her muscle relaxed and on the ventilator for too long are also incredibly dangerous.  We have no choice but to believe in and trust the doctors with our child’s life – it is so not an easy thing to do.

 Orthopaedics, in conjunction with Tracy from physio, came up this afternoon also to put some splints (they are like boots that fasten around her legs with Velcro) on Tahlia’s legs to keep them from bowing.  We have to make sure that they don’t cause any further pressure sores so they have to be checked every couple of hours.  The guy from orthopaedics was quite surprised at how tall she was and had brought a pair of boots that were too small so he had to go back and get another pair.  They actually caused some pressure on her legs, so Amy has decided not to do them up as she isn’t moving and hopefully that will help keep the pressure off.

 It’s now 5:10pm and she is still looking good.  BP 70, Heart rate 93, Co2 44 and temp 37.0.

 Another really lovely nurse, Amanda, was on again tonight.  She is great and I feel really comfortable with her too.  Tahlia had a nice quiet evening up until I left at 2am and Scott took over the second shift.    Both Scott and I are feeling pretty apprehensive about tomorrow.  I feel so sure though, deep down inside, that everything will be OK.  I guess we now just have to wait and see.

Scott said that she’d had a pretty good night, although her CO2 levels were still up and down.  The cardiac team came through with rounds at 7:30am and were happy with her progress to date as well.  Suctioning this morning was also good and Amanda and Libby managed to get up quite a bit of thick secretions, so that should help her.

 After I had my shower I went and bought breakfast from the cafeteria on level 1 and bumped into Tanya.  She is hating it on the ward as the nurses are not around very much and she is afraid to leave Cody as she is having continuous seizures.  She is also upset that Cody’s medications aren’t brought around on time and one medication was actually forgotten.  I really feel for her, she must just feel so alone.  I wish I could help her but now that we are in different wards, there is not much I can do. Her husband should be coming tomorrow, so hopefully that will help.  Poor Scott though – he had told me before I even got breakfast that he needed to go to the loo and of course by the time I had finished talking to Tanya it was about 45 minutes later!  He was very pleased to see me once I’d finally arrived!

 Scott left around 10am to go home, do some shopping and washing and then come back.  While he was gone Libby gave Tahlia the nebulised anti-fungal medication.  Her heart rate and in particular her blood pressure, promptly started increasing and dipping (BP moved between 90 and 25!).  I thought she was supposed to do it while someone was with her, but she started doing it on her own.  As Tahlia’s BP kept dropping I started to feel very anxious, but I was very glad to see Louise, one of the senior nurses came to help.  When her BP dropped to 43, Louise told Libby to stop the meds.  She picked up again pretty quickly but it was certainly very stressful to watch!

 During the day one of the cardiac fellows, Martin, came up and did an echocardiogram to check to see that there was no fluid collecting around her heart.  Apparently an x-ray showed some anomaly, however David Winlaw felt pretty certain that what was being seen was actually the re-routing of the mammary artery as the operation has now changed Tahlia’s anatomy.  Once he had finished his tests he told us that there was no evidence of fluid and everything looked good.  Scott and I were certainly relieved.  She also has an arterial line in her groin and Reno and Elle were concerned that it might get infected or get blood clots if left in too long, so an ultrasound was ordered to ensure there were no clots.  Luckily we were also cleared on that one too.

 The rest of the afternoon was pretty quiet.  Christina came onto the next shift and gave her another of the anti-fungal nebs at 9:15pm.  I was pretty nervous again, but she did a great job and by bagging her slowly rather than bagging at the usual fast rate of each breath, Tahlia stayed calm and all her stats were great all the way through.  We just had a strange spike though (11pm) when her heart rate suddenly shot up to 154 (from around 96) and her BP dropped to the 40s (average high 60s).  I was talking to Anj when it happened and got a little upset, so I don’t know if she heard me and that’s what set her off or if it was something else, but Christina wasn’t doing anything to her at the time, although she’d flushed a cannula a few minutes before, so no one is sure why it happened.  Dr Sabode did a quick check, but unless it happens again it’s not really a major concern.  It’s now 11:10 and her heart rate is down to 118 and BP is 59, so she is much better – very strange!!  A little while later she did it again – this time her heart rate went up to 168 and her BP dropped to 43!  Again, the doctors are not too concerned at present.  Her temperature has also been up and down today, ranging between 35.6 and 36.8.  The nurses have been covering her in plastic to retain the heat and putting the heat lamp above her on.  It feels like you’re sitting on the beach in the middle of summer in here and she is still taking ages to warm up.

 The nurses are lifting Tahlia every 4-5 hours for 20 seconds to give her body a break and try to avoid any more pressure sores and also try not to aggravate further the pressure sore she already has on the back of her head.  It is so scary watching them do it because if one person moves in the wrong way or moves her head, the consequences are too frightening to think about.  There is nothing they can do about the current pressure sore, and in the scheme of things it really doesn’t matter at the moment, however, we don’t want to get into a situation where it becomes infected as that will cause its own set of problems.  So moving her is necessary, but oh boy I hold my breath every time they do it!

 Scott came back at 2am so I went back downstairs to bed and just crashed!

Today was pretty similar to yesterday except this time the left side plugged up but they managed to suction up quite a lot.  She had another bronch with Peter and Alan this morning and that showed the blockage, but they managed to suction a bit more again, so in the end she sounded really good. Alan indicated that he wanted to start cutting down the muscle relaxant which horrified me.  He is worried about the effect being muscle repressed can have on the rest of her body – I am worried about the effect moving could have on her airway!  I spoke to Dr Elle later who assured me that they had no intention of doing that at this point, that they wanted to give her time to heal – thank goodness!!

 They have to get 4-6 people to help lift her a small way off the bed every couple of hours to help keep the pressure off her pressure sore.  That is another worry, so Brad borrowed a mirror I had and positioned it under her head to try and see if it had gotten worse.  It still looks the same and the dressing is intact, so they are happy to leave it at the moment. 

 She is currently stable with stats of Heart rate – 152 (it is higher than usual because they gave her 10 puffs of ventalin to open her windpipe as they were going to give her a nebulised antibiotic to try and kill off a fungus they had discovered growing in and around the surgical site.  The nebulised antibiotic should help move it quicker, but it turned out that Dr Elle didn’t think it was safe enough to do today because this drug can cause muscle spasms in children with asthma and as we are unsure as to whether or not she actually has asthma or not – hence the ventalin.  Apparently the ventalin will help prevent spasms from occurring, but as they haven’t actually performed this treatment before her (they use it at Sydney Children’s Hospital to treat the transplant kids), they didn’t want to run the risk of something going wrong.  I must admit I was pleased to hear that as I was pretty nervous in case something went wrong with no one around to help out.  She wants to wait until tomorrow when Peter Cooper is around.

 This afternoon Tanya and Cody were moved out to the CT Ward and then Kate, Will and Willow were moved to an isolation room as Willow has now come down with a slight cold.  It’s strange to be in here all on our own again.  A new patient arrived a little while ago, so we’re not totally alone, but it was nice when we were all together.  Hopefully Willow will get onto Edgar Stephens ward on Monday.  Tanya is still waiting to have confirmation of an operation for Cody, but she is still further along with that than she was 24 hours ago, so hopefully it’s a short time away!  It was also Kate’s 28th birthday today, so I bought her a little cupcake from the volunteer stall downstairs and 2 pairs of earrings that they were also selling.  Di also came in again this afternoon and we had dinner again together in the Bear Cafe and then brought Scott some back upstairs when we came back.

 It’s now 11:15 and I can hardly keep my eyes open.  Scott will be back up around 1am so I think I will have a little doze in the chair before he comes.  She is doing well. Amanda just did a big suction and got quite a bit up which is good.  The more they get up, the less chance of infection.

  Her stats are currently: HR 152, BP 70, CO2 55 and Oxygen 96%.

 Well, I didn’t end up going to sleep.  I started chatting with Amanda and then decided to back up all of the current hospital photos onto a CD.  When I’d finished copying them over, I started looking at the little video I’d recorded of Tahlia before we came in here with her playing in her baby bath on a really hot afternoon in our backyard about a week before she was admitted. (Photos - HospitalOctober 2009Playing outside in her old baby bath 23 Oct 09.MOV )  It was hard to watch as it just showed how alive and vibrant she was only  6 weeks ago.  While I was watching it, Dr Elle came over and asked if she could watch it too.  After it had finished, she stayed to chat for a while.  She is such a lovely lovely lady.  She said that in hindsight there may have some indicators that showed there were problems earlier on, but because this condition is so rare, there isn’t much data to compare symptoms to.  We talked about how everyone was so shocked about what happened and we went through again what had happened on Tuesday.  Until now I wasn’t really sure who was top of the pecking order in so far as who decided Tahlia’s ongoing treatment.  I thought it was Dr Cheng, but I now know that it is the ICU doctors we should be listening to.  They are more aware of what is happening to her and have more idea of her overall condition, not just the surgical side.   Dr Cheng was talking about turning down the muscle relaxant sooner than later, however Elle said that that would not be happening until next week as she needs the time to strengthen the new airway as much as possible.  I am so relieved to hear that as that was a real worry that they would try to take it out too early.  I think we talked for over half an hour. She was just so kind and concerned about us which I really appreciated.

 I also spoke to Susan, the social worker, about trying to apply for the carer’s allowance to help with costs.  It’s pretty expensive living here, food costs are ridiculous and even though we are only paying $20 per night for the hostel, that still adds up.  We’re currently paying $700 a week for the dog and cat to live in a five bedroom house while Scott and I pretty much live in a single room while sharing a toilet and bathroom with 20+ other families!!  I rang Centrelink and spoke to someone there at lunch time and she gave me the list of forms I would need.  I then met with Susan who gave me the forms in her office.  I wasn’t sure what her role was at first in relation to how she could help us, but I feel more comfortable with her now and she has been really lovely and concerned about what she can do to make things a little easier for us.  The social workers offices are downstairs on level one.  There is a long corridor of approx a dozen or more offices and what they have done down there is cover every single door with wrapping paper so that as you walk down the corridor it looks as though you are walking past a row of giant Christmas presents!  It is really cheery and looks fabulous.   

 Scott arrived just after 2am, so I left then to go downstairs for a sleep.

When I arrived back in the ward around 7:45am, rounds had just finished and Scott told me that she had remained nice and quiet and stable throughout the night.  The plan for today was for more of the same, so we were hopeful that she would remain nice and stable.  Peter and Alan proposed to perform another bronc around lunch time, so we were eager to see if anything changed since yesterday.

 Mum and dad arrived and stayed for an hour or so, which was lovely and dad is taking mum home and they will be back on Sunday.  Mum looks much better today so I feel much better that she isn’t going to get sick herself. Janine also popped in – she has just been such amazing support – after having virtually no contact over the past 8 years, it is as though all those years have disappeared and we have re-established our friendship as if that break never happened.  I guess that really is the meaning of true friendship.

 I brought coffee and toast up for Scott and I and then he went downstairs to the hostel to grab another couple of hours sleep before Alan and Peter arrived.    When they arrived I rang down to tell Scott and he was incredibly agitated because the door of the hostel room wouldn’t lock so he was having to move all my things into another room and didn’t know if he would make it back up in time.  Luckily however he made it in time to see the beginning of the scope on the monitor and we could see that there was improvement in the blockage found yesterday in the right bronchus.  They are all cautiously pleased with how she is doing at this point in time.   It just reinforces my strong belief that she is going to get through this! 

 The rest of the day passed in much the same way.  She has remained stable so that is all we can ask for at the moment.  One funny thing that I forgot to mention though was during the night when Scott was sitting beside the bed, he leant back in the new chair and broke it!!  It wouldn’t move back into the full upright position and you could see that the fabric had torn and a staple had come out under the chair.  It obviously wasn’t made very well, but I felt awful.  Fancy being 43 years old and being afraid of what the Nursing Manager (Anne) was going to say!!  As I said before, I feel much better towards her, but I am still a little intimidated by her and didn’t relish the idea of telling her when she obviously went to the trouble of getting it for us.  In the end I took the coward’s way out and told Oliver, the Nurse Practitioner, so he had it taken away.  I hope they can fix it.  Scott certainly hadn’t meant to break it!

 Poor Tanya had a pretty rough day today.  She looked absolutely miserable around lunch time so I went over to make sure she was OK.  She just cried and said she was so frustrated that the orthopaedic doctors weren’t taking any notice of her requests to check Cody’s hip and she couldn’t cope with seeing Cody in so much pain.  Cody was crying too and they had given her morphine to help the pain without trying to find out what was causing it!  I asked her if she had had anything to eat today and she hadn’t so I told her I was going to get her something to eat.  Di had arrived by this time so she stayed with Tahlia while I ran downstairs to get her a toasted sandwich and a bar of chocolate.  She has no one to help her, so it felt really nice to be able to do something for her.  Later in the day she finally got the doctors to admit she was right when, after finally doing an ultrasound, they discovered that the metal plate that had been put in way back in January had moved and cut through all the muscle!!  I couldn’t believe it!  It almost sounds like negligence.  The original surgeon and surgery was done at Sydney Kids Hospital and Tanya has left numerous emails and messages to try and get some help and answers from the surgeon and he just wont return her calls.   The whole thing is pretty awful.  At least now though, they finally have an answer that the hip does need attention and also all the MRI results came back OK which meant that they still don’t know the cause of the seizures.  Tanya still believes its from the hip infection, so it will be interesting to see what they eventually find!

 Di and I had dinner together in the Bear Cafe and we brought Scott up his dinner afterwards.  He is having first sleeping shift and went downstairs just after 8pm.  Around 9pm another baby was rushed in the only vacant bed space in this room, which is opposite Tahlia’s bed.  There is not a lot of room length wise between the two beds so they drew the curtain around our space.  The baby is only a couple of months old and has exactly the same problem as Willow.   There was a huge flurry of activity and Amanda apologised for all the noise and drama, but to be honest, I was writing this down and looking back and forth to Tahlia and have pretty much not heard a thing!  I know that Kate went and sat down next to the mum and comforted her.  At least she can reassure her after how well Willow is now doing (I hope that she doesn’t encounter all the problems that Willow had to go through first though).  It’s now 11:13pm and I think I’ve written enough.  Her stats are: Heart rate-93, BP- 69, CO2 43 and 100% oxygen.  She is doing so much better than expected!!!

 About half an hour after writing the above, Kate, Tanya and I started chatting and we kept chatting until Scott arrived back in the room about 1:30am!  It was a bit weird laughing and joking while our children are in pretty precarious states, but it was also quite cathartic as it was nice to feel just normal for a couple of hours and blow off some stress and steam.  They are both terrific girls (well young women – 28 & 33!) I will miss them when they go to the ward.

Her C02 levels suddenly increased so they did a suction around 7:30am while the doctors were doing their rounds and they discovered a plug had formed which they had trouble suctioning out.  Peter Cooper was called to perform a fibreoptic broncoscopy and see if he could see the obstruction and if they could suction it out.  They managed to get some out but there was still some swelling so they washed it out with a saline wash. It seemed to help a bit.  Her right upper lobe and tracheal bronchus isn’t working too well at the moment, but air entry on the left side is fine, so they are happy to let that go for the moment and hopefully it will get better over time.  Peter is scheduled to come back at 5pm for another bronc and hopefully clear any further sections.

 Susan, my cousin, came in to visit, which was so lovely and brought the most beautiful framed picture containing photos of Tahlia that she had made.  Mum and dad came in just before she left around 1pm and shortly after Scott came back, so I went downstairs with them to get some lunch and brought it back.  They will come in and see us tomorrow and then go home.  I told mum to get some rest as I will need her when Tahlia gets better.  I don’t want her to get sick!

 They did another small suction around 2pm and also suctioned her mouth where they got out a little bit of blood.  They think it is old blood and that it’s nothing to be concerned about, but they will keep an eye on it.  David Schell also told us that the sputum cultures they took yesterday have come back showing that there is some sort of fungus present, so they are now treating that with more antibiotics.  She is back on an incredible amount of medication including morphine, heaps of antibiotics, midazolam (the amnesia drug), vecruonium, dopamine amongst others.

 At this point in time,  4:45pm, she is still stable.  Her stats are reasonably good and she hasn’t given us any scares today apart from the earlier plug.  It’s been amazing though, all the nurses and some of the mums we have met in here, coming up to us with tears in their eyes and giving us hugs to say how upset they are over what has happened to her.  Janine and Kate also came in providing more tears and hugs! There are so many people rooting for her!  She just has to get through this!

 Peter and Arjoy did another broncoscopy around 5pm using a smaller broncoscope. They are happy with the results in so far as nothing has changed since this morning’s scope except that the right bronchus seems to look slightly better.  Scott and I could see the vision on the screen as Peter directed the scope down her tube and even though we don’t really know what we are looking at, what we could see didn’t look too awful.  You could see that the right bronchus was more blocked than the left, so hopefully that will just get better as time goes on.  They also put a gel mat under her head to help with the pressure sore.  That was a bit scary as any movement in her head could cause a major problem if the tube moved.   It took 6 people to do it, but they did it, so hopefully that will help alleviate getting another pressure sore.  Her urine is still cloudy and has a lot of sediment in it so they are doing some tests on it.  The line in her arm has just leaked blood too, so they have to keep an eye on it that it doesn’t leak any further.  This is the line that records the blood pressure, so the monitor should have alarmed when she started losing blood, so they will keep a good eye on that too.  She hasn’t tolerated any food in her NG tube as yet, so hopefully tomorrow she may tolerate it better.  She will need the nutrition to get stronger

 It’s now nearly 8pm and she is remaining stable.  Her BP is 64, heart rate 123, oxygen 100% and CO2 48, which are all good numbers.  Scott has gone home to feed Honey and Moet and have a shower, so he will be back here soon with dinner and then hopefully we will both manage to get a bit more sleep tonight. Amanda, the nurse from yesterday day, has just come on to relieve tonight and she just came up to me and gave me a big hug.  The level of support and kindness here towards us all is just overwhelming.  Tahlia has affected so many lives already and I know that she will continue to do so.

 Scott arrived with dinner and we actually ate together for the first time in 6 weeks.  I had bought a present for Willow last week to give to her after her operation, so Scott told me to go and give it to Kate and then he would go to bed until around 2am and then I would go and have a sleep come back in the morning.  When I went around to see Kate, Nicky, one of the really nice nurses was with her and there was no-one else in the room.  They were sitting there chatting and Kate told me Willow was doing really well after having had her pacemaker put in today. It was strange to see our old bed space empty and Kate and Willow just there on their own as all the other patients had been moved on to the ward.  We started chatting and about 10 minutes later Tanya, Cody’s mum (who was also with us in the room until the day before yesterday when she was moved into the room we have been put in now) walked past and stuck her head in the door to say goodnight. Before we knew it, 40 minutes had passed with the 4 of us just sitting and chatting. I must admit, that in amongst all the terror and confusion, just sitting there sharing feelings and thoughts with other women in the same circumstances felt so good. It has been a long time since I have felt that level of friendship and solidarity.  Willow started to wake up so Kate went to attend to her and Tanya left to go downstairs to bed.  I suddenly realised I had left Scott sitting there waiting to go to bed!  I rushed back and he was great and made a joke about sending out a search party.  He then went into the parents room up here to have sleep and I settled into the new chair that Anne brought around to us earlier – they have order a couple of new chairs for the parents to sit in and this one reclines slightly, so it will certainly make sitting by the bed overnight a lot more comfortable!  It was really lovely of her to give it to us first .  Shortly after Nicky came in saying that they were moving Kate and Willow into our room, so the three of us were all back in the same room again!

 Kate and Tanya are such great, positive women.  Tanya shared her story with us and I was so incredibly moved by her strength of character in circumstances that most people could never imagine.  Cody, her daughter who is here, has cerebal palsy and was admitted with seizures last week.  Even though she is wheel chair bound, she plays hockey, goes to school and lives a very happy and normal life.  She apparently had a metal plate put in her hip last January and Tanya is sure that it has become infected as it has become painful and she thinks it could be contributing to the seizures  but none of the doctors she has seen has taken her concerns seriously.  She comes from Bathurst and has two little boys at home, one with cerebal palsy and one with a rare skin condition.   She has had two other babies that have died and her husband had a 64 gallon drum drop on his head, so he is now suffering from epilepsy and short term memory loss.  After 16 years of trying to get married (each time they arranged it she apparently fell pregnant!) they finally got married 6 weeks ago and then Cody had a terrible episode where she nearly died the day after the wedding.  I couldn’t believe her story!  She is here on her own as her husband has to stay in Bathurst to look after the boys and apparently there are bush fires up that way and two of their friends have been badly burned.  Her husband rang to say that he was told he may have to evacuate as the fire was only 2km away from their new house (they had only just moved in and hadn’t even finished unpacking the boxes).  Through all this she still manages to smile.  You can’t help feeling quite humbled by someone like that.  She is very unassuming, but strong and my heart just goes out to her and her family.  She is really struggling to get the doctors to take her seriously in regard to an infection in Cody’s hip and I just wish there was something I could do to help.

 After chatting with Kate again briefly after she moved in, I settled into the new chair and read for a while before dozing until Scott arrived around 2:30am.  I went to the toilet and was just about to go into the room when Kirsten, one of the senior nurses, asked me if I would mind giving up the room as we had the hostel room downstairs and they had a couple of emergencies coming in and they needed the room.   I told her that was fine, so we moved the rest of our stuff back around to the ward and then I went back downstairs and crashed until 7am!

Well today couldn’t have been more awful if it had tried.  Today we almost lost our precious little girl.  I don’t really know where to start.

 After sleeping all night until 7am, Tahlia woke up happy and smiling and ready to play.  We got her out of bed and sat her up in the pram and put a table across her lap so she could play with her Dora toy boxes.  We were having a lovely play.  At one point she kept stroking my arm and then reached out and put her arms around my neck and gave me a hug.  It was the most wonderful feeling!

 At 8:30am, Annie, one of the physios came in to start the morning’s physio.  She said it was OK to do it while she was sitting in the pram and although she was a bit grizzly during the pats, she was OK.  Once she started suctioning however, everything changed. Within the first minute or so she started struggling.  I could see her trying to breathe.  The tube she was using to suction wasn’t doing the job, so she asked Amanda to find her another one.  Annie was standing behind the pram and I was in front, holding Tahlia’s hand.  I could see her oxygen levels starting to drop.  I called out “she needs to be suction NOW”.  Annie wasn’t aware I don’t think of what was happening, but I could see Tahlia really struggling and becoming very distressed and scared.  I yelled out to Amanda that she needed to be suctioned straight away as she was really struggling with the secretions.  The alarms were going off and I saw her oxygen levels drop to under 30!  I heard Annie ask “are those stats for real” and after looking at her foot to make sure the probe was on correctly, I yelled out YES!  From that point on, everything is a bit of a blur I’m afraid.

 Suddenly all her stats started to drop and Amanda pressed the emergency button and a cast of thousands suddenly came running into the room. Brad was bagging her but didn’t think that she was actually able to move the air into her body.  Dr Elle, the Intensivist took over and called Alan Cheng. It was decided that she would have to go to theatre for a look at what was happening.  I rang Scott and he was on his way to a meeting at Mascot.  Luckily he was able to turn around and come back and was here in about half an hour.  She went into theatre around 10:00am and came back about an hour later with a breathing tube in her mouth.  As Alan wasn’t in the hospital they hadn’t wanted to do anything so they had intubated her to keep her stable and were waiting for Alan to come back in in the afternoon for a more definitive look.  I went down to the hostel to have a quick shower and while I down there Scott rang to ask where the DVD player was - she was awake!  I raced back up as quickly as I could and when I got there Scott said Alan had been in and that she would be going back to theatre shortly.  She was wide awake and watching Dora.  Scott said that he’d put on DVD on but that wasn’t the right one so she indicated she wanted another!   She kept looking at me and pointing at the tube in her mouth indicating that she didn’t like it. She did “cheeky eyes” and even tried to mouth the word “bubbles” as a bubble had formed in her mouth!  I thought she was supposed to be knocked out and was quite amazed at how alert she was.

 At around 1:45pm Scott and I went back around with her to the theatre.  We were pretty nervous on what they were going to find, so we waited in the waiting room outside ICU until she was ready to come back.  Amanda, our nurse, came out and said if we wanted to , we could watch the monitor inside the room which was connected to the monitor Tahlia was hooked up to in theatre.  Scott decided to go in and watch while I finished talking to my friend Janine who had come up to say hello,  Poor Scott though, as he walked in, the stats on the monitor flatlined and he almost had a heart attack!!  It was just because they had finished in theatre and were disconnecting her from the theatre monitor.  It was about 2 hours since she had gone in, so we were happy to know that she was on her way back.

 When she got back the anaesthetist, Harry, said that they had discovered problem. (I can’t remember exactly what he said – my head is just a bit too jumbled today!)  Alan also said that they had discovered a patch of what he thought was more “slough”, however he wasn’t sure what it was.  He needed more time to work out what he was going to do so was looking at taking her back to theatre tomorrow after he’d had time to think about what was wrong.  Unfortunately the luxury of time was taken away as all of a sudden, while Amanda was straightening up her lines, her stats started to fall dramatically.  Once again the room was full of people trying to keep her alive.  She was suddenly in an acutely critical condition and was bagged and rushed straight back to theatre.  It was now around 4:30pm. 

 Scott and I were absolutely devastated!   Brad came into the room and drew the curtains around us and asked us if we wanted them to call anyone.  I had already gone out to call mum and Di , so they were on their way.  Rino, the Intensivist then came in and delivered the most horrifying speech we had ever heard – our beautiful little girl did not have much chance of making it – 1 in 100 were his exact words.  Tears were welling up in his eyes as he spoke to us, painting the worst possible picture we could ever imagine.   I cannot desc ribe the way I felt.  It was as if someone had just taken a knife to my heart and stomach, I just could not comprehend what was happening.  How could our little girl, who was smiling and happy and playing happily this morning be in this position?  After Rino left, David Winlaw called and said he was on his way in but that he wanted to talk to us first before he went into theatre.  Mum and Di arrived and were very distraught.  David arrived about 30 minutes later,  sat down with us and basically reiterated Rino’s words that there was not much they could do for her and although they would try their best that realistically she may not make it!   I cannot accept that, no matter what they say!!!!!!!!!

 Brad came in and introduced the evening social worker as Susan, the social worker on during the day had gone for the day.  I don’t really know what she was there for.  She asked how we were and at that point I thought it a pretty stupid question.  I really didn’t want to talk to a stranger!  She pretty much just sat there saying nothing, which made me feel even more stressed that I should be saying something.  Finally she said that she would go as it was sometimes hard to talk to a stranger. Gratefully I agreed and said that I really couldn’t talk at the moment, so she went.  It was too hard to mentally comprehend what was happening, let alone with a stranger watching you!

 After she left, we all sat and cried and hugged each other and just generally tried to absorb the enormity of the situation.  Mum had tried to call dad but he was out, so Di rang Aunty Carol and she volunteered to drive to Nelson Bay and pick him up and bring him back.  Mum was worried about him driving down by himself as was I.  Brad came in a while later and said that we would be moving into another room which was bigger to accommodate all the equipment she might need (they thought she might end up on the ECMO machine – this moves blood, oxygen and regulates the heart – it’s a pretty serious machine to end up on and has it’s own source of complications, so we were hoping that she wouldn’t have to be on it). We were put into bed 14, opposite the bed she was intubated in last May!  At least it’s a bigger space and we now have a window position again - like that really matters in the scheme of things!  Brad organised for us to have one of the parents’ rooms that are in ICU so that we could store the stuff we didn’t need at the moment and so we could get some sleep when we were ready.

 Wade arrived and then Aunty Carol came.  She didn’t end up going to pick up dad as he decided to drive himself.  Mum and Di and Wade went downstairs to have some dinner and get us all coffees and in the meantime Dr Ian Nicholson, cardiac surgeon, came in to talk to us.  By this time it was sometime after 9pm.  Dr Nicholson is an adult and paediatric surgeon, and from all accounts, one of the best along with David Winlaw.  He told us that the surgery had gone better than they anticipated but that what had happened was that they had discovered that the top wall of the trachea had basically disintegrated.  The blood supply had stopped which meant that the tissue had died and there was some infection around the original surgical site.   No one was initially sure what they were going to do and apparently a lot of emails went around the world looking for help.  We subsequently found out that the only thing stopping the hole from leaking was the aorta!! No one knows know how she survived as long as she did without any symptoms. 

 While they were waiting for Drs Winlaw and Cheng, Dr Peter Hayward, a premier plastic surgeon in the hospital, (he helped Sophie Delizio, the burns/car accident little girl) and decided to offer his services and in conjunction with Dr Nicholson.  He remembered reading a French paper on the merits of using the internal mammary artery in grafting repairs.  This artery is a blood vessel located on the inside of the chest cavity. It is rich in red blood so will help the tissue to grow. So what they have done is basically fashion a new wall of the trachea out of part of her rib cartilage and the artery.  Alan and David Winlaw were also very involved in the surgery, which lasted around 5 hours.  The cartilage will act as a support for the windpipe and the artery will supply the blood necessary for it to heal and hopefully take hold.  She has been intubated again and will be muscle relaxed for the next 7 days so that she can’t move and disturb the tube currently keeping her trachea open.  There is a huge risk that the repair may leak or just not take, so the next week in particular is going to be critical, as are the next few months.  She is a very sick little girl again.  The doctors are unsure themselves if this is going to work – however I know she is going to be OK.  There is no other option, she has to get well.   If this doesn’t work, we have been told there is nothing else they can do – and that, of course, is also not an option!

 Peter Cooper came in and saw us and was at least a little more optimistic about her chances of surviving this.  We had to leave the room shortly after so they could set up and prepare for Tahlia’s return from surgery, so we went to sit in the parent’s lounge.  Mum and Di and Wade arrived just before we went bearing coffees and banana bread!  As we walked up the hall I bumped into Wade, spilling my drink all over the carpet!  I couldn’t believe it.  Thankfully the carpet is already a bit marked and a nurse, who had just come in through the doors after it happened, told us not to worry and helped Di to clean it up as much as possible.  Wade then left to go back to our house to feed Honey and Moet and mum and Aunty Carol went back downstairs to get me another coffee.  Di, Scott and I went into the parent’s room but there was someone there, just as we were trying to decide where to go, David Winlaw came in and wanted to speak to us.  He took us into the little interview room down the corridor, where he explained how the operation had gone and how “quietly euphoric” he was.  They are still worried and we are not out of the woods yet, however she was doing well and all her stats were looking pretty good.  I said to him that I was sure that there would be a paper written up about Tahlia one day and he laughed and said that it would get written when they’d had a lot to drink to forget about this day!  I think it was pretty traumatic and stressful for everyone!

 Mum and Carol arrived shortly after and Di went downstairs to move Scott’s car.  Dad then arrived and got a bit of a shock when he saw mum and I crying and talking in the corridor.  I think he initially thought the worst, so we reassured him that she was stable and we were waiting for her to come back from theatre.  We all went back into the little interview room until Catherine came in to tell us she was finally back, around 9:30pm.  Scott and I went in first.  She has two drainage tubes, the ventilator tube and of course numerous canulars,tubes and medications.  Her head has also been hyper-extended which means it is lying far back with a neck roll behind her shoulders so that her airway is extended as much as possible.  Her top lip has been lifted up a little bit by the surgical tape, so she looks like a little sleeping bunny rabbit as you can see her front two teeth!  I cannot explain how grateful and happy I felt at knowing she had come through the surgery.  I truly believe that she will make it!!  It is also very very strange to see here pretty much back in the same position she was 6 weeks ago. She is so strong.  It may take a while and I know we will still have some hurdles to jump, but she’s made it this far and I just know she will continue to improve.

 Mum, Dad and Aunty Carol came in to see her quickly and then they left (poor mum looked completely shattered).  Scott then decided to go home and quickly shower and change and see Honey and Moet and then come back.  Di stayed until he returned.  She remained stable throughout the whole night, thank goodness.  (I went and had a sleep in the emergency parents room that they had provided until 6am when I went downstairs and had a shower and changed.  I woke up around 2:30am to go to the toilet and picked up the wrong key and locked myself out!  I had to go to the desk, so I checked on Tahlia first and she was still the same, and then the girls at the desk couldn’t find another key so they had to call security to let me back in!  I felt so stupid!  I was half asleep and must have looked a sight!  Scott stayed with her and then left to go and have a sleep himself for about 4 hours in the room up here later in the morning.)  She made it through the night, so that is one more step forward to her complete recovery!!

She woke this morning coughing at 5:30am, but was happy and smiley.  She wanted Dora on but I told her it was too early and she was pretty good and accepted that.  I let her rest until after 6am but she started to get restless so I started playing with her.  We had to wait until after physio before she could have breakfast, and they didn’t arrive until about 9:15am, so she was getting a bit hungry by then and her cough was also quite a lot worse and wet sounding by then.  I was quite glad when she finally came and Tahlia even had a little giggle at the beginning of the pats, and then of course, decided she didn’t like it and started to get upset.  She suctioned up a fair bit, but you could still hear a bit of gurgling.

 After physio, Nicky decided that we would take her outside, so we took her breakfast and sat outside again on the staff terrace.  It was a beautiful warm sunny morning, so it was really lovely to sit outside and enjoy the sunshine.  She managed the mask off for an hour and when we went back inside to put it on she got a bit upset when we went to put in back on.  Luckily mum and dad arrived right at that time and managed to quickly distract her.  As usual she was all smiles for mum.

 Brad came in and asked if we could have a quick meeting around 11:30am to discuss putting together Tahlia’s routine.  So when the time came (just before 12)  Brad and I and Susan, the social worker, went back outside onto the terrace and talked about putting together a schedule so that everyone would know what was happening and when.  Brad acknowledged that with 120 staff, there are a lot of different opinions about how to do things and that it can get quite confusing to know what is the right thing to do.  Oliver, Michael and himself are to be the main point of contact if there is a problem and they will prepare and implement the schedule each week.  It does make sense to have something in place and it will be good for Tahlia I think, just as long as it’s not too rigid.  At least this time they will incorporate proper meal times and an afternoon sleep/rest period, as there are going to be a lot of different people assessing her and doing things to her/with her each day.

  Lisa from OT came up around midday and brought up a special chair that Brad had requested for Tahlia to have a shower in.  He said he would take her into the patients’ bathroom for a shower and wash her hair around 4pm this afternoon, so that will be great for her.  She keeps scratching her head, so I don’t know whether she is itchy or if the pressure sore is getting itchy.  Having her hair washed should at least make her feel nice and clean again.  At 12:15 mum started to give her lunch but she was finding it hard to eat as she kept coughing and was working a bit hard.  We gave up after about 15 minutes and put the mask back on after giving her a puffer, like the one she has at home, with ventalin.  She seemed much better afterwards, but we’re not sure if that was because of the mask being put back on or the ventalin.  We put her back into bed around 1pm and she was just starting to fall asleep when the young physio girl came into the room, leaned over her bed and started asking what time she should come back to do physio.  I could have strangled her!  She talked so loudly that Tahlia immediately woke up and that was the end of any sleep!  She asked for Dora to be put back on so I put it on for her and she at least rested watching the DVD until just after 3pm when the physio girl returned.  She once again suctioned up a reasonable amount and they also took a nasal sample and sputum sample to send away to be tested.  She had also been indicating that something was irritating her in her nappy so Jo attached a special little bag in her nappy to get a urine sample to send off.  I hope she doesn’t have a urine infection - that would be all she needs!

 At 4pm Brad came back and took off her mask again and put her in the special bath chair and wheeled her into the patient shower.  He was fantastic with her. She really seems to trust him (when we were all initially discussing giving her a shower she was asked who she would like to give her the shower – me, grandma, Jo or Brad.  I had actually just stepped out of the room to get something when they were talking about it, and apparently she decided she wanted Brad!)  The shower has a hand held hose so he quickly wet her and washed her hair while I washed her body.  I think she enjoyed it.  Afterwards we covered her in towels and came back and put her into bed to dry her off properly and get her dressed.  Mum had brought her another beautiful set of pyjamas from Sussan, so by the time she was finished she looked lovely.  Brad and Jo braided one side of her head each, which looked really cute and then we put her back in the pram and took her for a quick look at the fish and the Christmas tree and then came back to the room to have the mask put back on, which she tolerated reasonably well this time (she’d had it off for about 30 minutes).  Di arrived shortly after, so we opened presents (Di’s birthday) and had a play and then it was time for her dinner, which Di fed her.  She ate a reasonable amount before we had to put the mask back on (40 minutes). (Jo is concerned that the extra “bolus” feeds of milk that Tahlia has been scheduled are too much – she was complaining that her tummy was sore, and she had a lot of wind in her today.  It does seem a bit strange that they are giving her a further amount of “food” through the NG tube immediately after she has eaten, even if she’s indicated that she is full.  Jo spoke to RIno, the Intensivist about it and he agreed.  I think they are going to talk to Brad and/or the dietician tomorrow to see if she really requires these extra bolus feeds. She is still getting a continuous feed of pedisure throughout the night – 60ml/hr) 

 Mum and Di left shortly after and then Scott arrived just after 7pm. I went downstairs around 7:30pm, had some dinner that Di had brought in and went to bed and pretty much crashed.  I got up just after 11:30pm and had a shower and got back to ICU about 12:10pm.  Scott left shortly after.  He said that she had fallen asleep pretty much as soon as I’d left but then physio came around 8pm and woke her but she went back to sleep after 10 minutes or so and had been asleep ever since.  Hopefully she will continue to get a good night’s sleep.  I think I will now join her! (It’s 2:30am).

As mentioned above, physio came at 8:15am and after some pretty vigorous patting, she coughed up a lot of thick mucus.  She tolerated it really well, she must have really wanted to feel better – she’d been coughing for such a long time.  We took the mask off to suction about 8:40am and before she ate breakfast Holly wanted to check her pressure sore.  She took  off the old dressing and put a new dressing on.  It does look a bit smaller but still looks pretty infected and awful.  She cleaned it up, redressed it and then we then got her into the pram.  She had about half a bowl of weet-bix and 2 of her special cups of milk for breakfast.  She actually asked for milk (mee-yook as she pronounces it – sounds very cute) a few times and after first mouthful she put her arms over each other and made a brrr noise.  I asked her if it was cold and she smiled and nodded “yes”.  It was a lovely moment.  Di arrived half way through which brought lots of smiles and Di played with her while I ate my breakfast.  She had the mask off for nearly an hour and was doing pretty well apart from the coughing.  When I put it back on she was pretty good – Di was a good distraction!  After a while though you could see her getting tired, so I put her back into bed and she fell asleep almost immediately (10:40am). It’s now 3:20pm and she is still asleep! 

 She actually slept through until 4:30pm when Holly came in and said they’d decided to wake her, give her physio and take her for a walk in the pram.  Rather than re-write the events of the afternoon, I have copied over what I wrote to Alison, my friend in England who’s daughter Tahlia also went through what our Tahlia is going through, this afternoon . . .

Your analogy of [living through] a war zone is pretty spot on.  I’d never really thought about it but it is true. It’s like, what I would imagine, being in the middle of a bombing raid and not knowing when it was going to stop or if the bomb was about to drop on you!  Another stupid comment has left me seething this evening, so I hope you don’t mind but I have to get it off my chest before I get some sleep!  They have decided today to try to get Tahlia into a routine as she is all upside down at the moment.  She hasn’t been sleeping well at night and is therefore sleeping through the day when she gets overtired.  An example was yesterday as she was upset and sore (probably from the after effects of the bronc & dilatation) and was continually coughing throughout the day and therefore couldn’t/ didn’t sleep all day or much of the night.  This morning she kept waking herself up as the secretions had built up and she didn’t have the strength to cough them away.  After 3 suctions from the nurse (which I had to request) and then an hour later physio and more suctioning, she was exhausted and actually slept for 5 hours!  She sounds like she has an acute case of bronchitis, but no one apparently cares that coughing all day depletes the little energy reserve she has (but that’s another matter altogether). 

 Anyway, to cut a long story short, the nurse on today decided that she needed to be woken up, be given physio, then put in the stroller they brought up for her at the end of last week and taken for a short stroll off the mask outside into the staff courtyard which is just off the ICU ward.  She was pretty upset to begin with as she was woken out of a sound sleep pretty abruptly. However once she saw the fish on our way outside, she was fine again.  Now, I didn’t have a problem with that – after 6 weeks it was great to be able to take her outdoors for 15 minutes.  What did get my back up was when we got back and put her back into bed, Holly told me that it had been decided to give Tahlia a sedative (which they assure us will not affect her airway), which will knock her out all night so that she can wake up at a normal time in morning and try and get back into a routine.  Again, I don’t have a problem with that either, however it would have been nice if it had been discussed with Scott and I first as I don’t really like them using sedatives on her unless it’s really necessary, and as she is still requiring physio last thing at night to clear the secretions,  I don’t know how that’s going to fit into “their routine” - but then Holly had the nerve to say to me that the reason Tahlia was in such a bad routine was partly their (the hospital staffs) fault and partly Scott’s and my fault!  Well as you can imagine, I saw red at that!!  What a ridiculous thing to say!!!!!  They are the ones who have requested physio visits at 3am in the morning.  They are the ones who require her to have nebs at odd hours during the night.  They are the ones who pumped her so full of high potent steroids (which one of the doctors has even intimated was too high a dose) which made her so hungry and agitated that she couldn’t sleep, they are the ones who bang and crash and talk and laugh loudly in the room at 2am . . .  and so on and so on.  I would really like to know how Tahlia’s sleeping patterns can be attributed in any way to me – except for trying to let her stay sleeping (even if it is during the day) so that she can recover some strength.   Well now I’ve got that off my chest, I feel a little better.  It just gets so frustrating some days!  Ahhhhhhhhhhhhhhhhhhhhhhhh!

 I left to go downstairs not long after that and am just about to go to sleep.  It will be interesting to see if she is fast asleep when I come up at 1am to relieve Scott.  I want her to get better, of course, but I don’t everything rushed so that she goes backwards again.  Holly let her have the mask off for nearly an hour and a half.  I understand her saying that if we don’t try it then we won’t know, but I thought that the Doctors were doing it slowly with only half hour to an hour off maximum at a time so that she didn’t get too tired out.  I just wish they would all stay on the one page!  You get told one thing from one person and something totally different from someone else! She is going to be bombarded next week with all her therapies – I just hope they are not trying to overdo it with her, she is still not strong and needs rest as well as everything else!  I guess only time will tell.  Maybe I’m just being an overprotective mother, but I am honestly scared that they will try to get us out of here and home (not that I can’t wait to go home) too quickly and that something bad will happen once we get home.  I want her to be as well as possible, if we miss out on Christmas this year at home, I don’t care.  It’s just another day and we will make up for it once we do get home.  I just want her well – and not rushed!

 As soon as I came into the room just after 1am, Victoria, the night nurse grabbed me and told me she was concerned about the roster proposed for Tahlia and that she had some thoughts on making it work better.  She had jotted down a whole lot of notes and asked what kind of routine we had at home and how it should be adapted to fit in with the hospital.  She said that we needed a case manager, usually the Nurse Practitioners, and that she would pass on her ideas to Brad in the morning.  I think that getting her into some kind of routine would be good, but I really don’t know how it’s going to work properly as there is so much noise and light and stuff  going on most nights that it’s impossible to sleep properly anyway.  I guess we shall see!  Tahlia had been given some chlorohydrate (I think that’s what its called) which is a non-opiate sleeping drug, to make her sleep through the night in the hope of starting to establish a proper night sleeping pattern.  She certainly looked nice and peaceful and Scott said that she’d fallen asleep after physio, around 9pm.

The day started off not particularly well and really didn’t improve much (at least up until this point of 4pm).  Unfortunately Tahlia was woken very abruptly at 8:30am  when her mask decided to slip off her face as she moved her head slightly to get more comfortable.  I heard the “whooshing” noise and jumped up to see the mask slide off her nose and onto her cheek!  She of course got a hell of a fright due to both loss of pressure and the noise it makes.  I managed to calm her down, but then noticed that her bed was all wet as her nappy had leaked! At least she had managed to sleep through the night though as I thought with all her sleep yesterday that she may not sleep all night).

 I changed her and then put her in the pram ready for breakfast while Holly changed the bed.  She was a bit coughy and continued to cough regularly after I took the mask off and gave her breakfast. (she pretty much coughed during every mouthful of weet-bix).  She had the mask off for 45 minutes (until 10:15am) and as she was coughing so much I thought I wouldn’t give her any further time.  When I went to put the mask back on she became really upset and cried and grizzled until about 11am!  We were ready to try the finergan again, but luckily she settled down and just watched a DVD or two.  She really wanted to sleep but because she is coughing so much, she kept waking herself up.

 At 1pm I thought she could get up again as she’d at least had a rest, so we put her back in the pram and took the mask off again to give her lunch.  Peter called in to check on her and advised that the budecinide neb would now be cut down from 4 times a day to twice a day and that she would be given additional saline nebs in its place.  She is also being put onto a lesser steroid called predizone in place of the decreased budecinide (or dex, I have to check which one it’s replacing).   She gave him a little smile and I continued with her lunch.  She managed to speak a little bit – I asked her a couple of times if she wanted veggies or milk and she kept saying “milk please” in a very soft voice.  It was very cute.  Unfortunately though she kept coughing all the way through her meal.  I kept telling her that we mustn’t have had put the lid on the rubbish bin tightly enough so the yukkies kept escaping and were sneaking back to make her cough.  I don’t know whether she understood this, but she appeared to.  I put her mask back on after 45 minutes and she coped with that pretty well this time, but within about 20 minutes she was getting really grizzly and tired again. 

 I played with her using some of the toys play therapy and OT had left and then Tracy arrived at 3:15pm and did some physio and a couple of suctions, which really seemed to help – for about 5 minutes!  We put her back into bed and she immediately shut her eyes but she is still coughing a bit and keeps waking herself up.  It doesn’t help that there is so much noise in the room.  I think the nurses forget that they talk quite loudly and that pulling the curtain right around the bed doesn’t block out any of the noise!  It’s 4:10pm and she’s now been trying to sleep for 40 minutes. She just manages to nod off and then a noise or a cough wakes her again.  At least she isn’t crying, so I guess that’s  a good thing.  I know it’s not her fault and if we were in a private room it wouldn’t matter, but when she’s crying all the time you can’t help feeling that the other families in the room must be cursing her and wanting her to be quiet so their child can rest.  It’s really hard.  I must admit that I’m feeling a little weary now!  If I can just get her to at least rest for another hour, that would be a help.

 She did end up resting until about 5:30pm but was still pretty unsettled.  She didn’t want to eat dinner so Holly gave her a bolus feed of 165ml of pedisure (the milk drink she has through the NG tube) in place of her eating as per the new feeding schedule.  I played with her for a while and we watched some more Dora DVDs and then Scott arrived around 6:30pm with his arms laden with bags.  Some contained returned washing (Tahlia’s and mine), a couple contained food (breakfast cereal, bananas and my dinner) and two were big Christmas bags containing pink decorations (of course) for Tahlia’s bed and red and green decorations for Willow’s bed!  I think it is so lovely that he wanted to include Kate and Will and Willow and help them have some Christmassy stuff around them.  After we had decorated the room Tahlia started rubbing her tummy and after shaking her head in an emphatic “no” to the suggestion of custard or ice cream, we finally agreed she could have some vegetables, which met with a big smile.  She shouldn’t have felt hungry as she’d had that bolus feed earlier, but she ate half of it and drank some milk (still being thickened) and after she’d finished and I’d put the mask back on (which she tolerated reasonably well) I left to go and have some dinner and sleep.

 Scott told me when I came back up at 2:45am  that she’d had a pretty rough evening, coughing and being unsettled.  She’d slept for about 2 hours before physio came and they had to do a couple of suctions which brought a lot of stuff up.  Unfortunately it took ages for her to calm down and go back to sleep after that.  She finally went to sleep about 2am and then woke again around 5am.  At 6am she kept crying so I turned her over a couple of times and she drifted back to sleep only to wake again crying and coughing.  I must admit I was getting a little cranky that none of the nurses offered to help or find out what was wrong.  They really do switch off sometimes.  Finally I got one of the nurses from the other bed (Inge) (Claire was on her break) to come and give her a suction as I could hear she sounded quite congested. She suctioned quite a bit up.  She rested for a little while, still coughing until Physio came (a girl I hadn’t seen before) at 8:15am.

She slept through for the rest of the night and woke around 7:30am.   We got a call soon after advising that she was first on the list and would be collected for theatre at 8am.  I walked around to theatre with her and they let me come in with her.  The anaesthetist told me that the last few times she’d been in she had had some problems breathing as she went to sleep and had destaturated.  That was the first time I’d heard that apart from last Friday night when I couldn’t go in with her.  He may have just been meaning that time, I hope so.  The thought of her struggling to breathe like that all by herself makes me feel quite sick.  Anyway, I think that’s why they allowed me to go right into the theatre with her until she was asleep.  I kept talking to her and trying to keep her calm as they put her on the theatre bed and she was so good.  He asked me to try and put the anaesthetic mask on her but she started fighting me so he had to do it.    She struggled briefly and then went to sleep.  It must be so frightening for her.  It really is quite amazing that she is still able to smile.

 After I left the theatre I went downstairs to the coffee shop to have some breakfast and wait for Scott to arrive.  He arrived about 15 minutes later and a 9:30am we got the call that she was back.  When we got to the room she had just arrived and was starting to wake up.   We didn’t know how everything had gone except for the anaesthetist saying that he thought it had gone well and that she was breathing well on her own.  Dr Gillies said he would find out as soon as he could what they’d found and let us know, however he thought it may take a while as he assumed Alan probably had a full theatre list this morning.  There were some photos of the surgery and you could see the before and after effects of the dilatation.  It was amazing how open and round the area looked now.

 Once Tahlia was fully awake she was really unsettled and started crying.  This escalated over the course of the next 2 hours.  She was inconsolable.  She couldn’t stand anything touching her ie. blankets etc or even me touching her.  DVDs, toys, books – nothing worked to calm her down.  She was given some panadol but that did nothing, so eventually Simone gave her a small dose of Finergan (not sure of the spelling).  She was still pretty upset 15 minutes later, so one of the doctors prescribed her a sedative. Simone queried that that would be safe to give her and he assured her it would be, but I must admit I was a bit unsure, especially after what a number of the doctors and nurses have said about giving her sedatives and the negative affects they can have on her fragile airway.  Anyway, as luck would have it, literally 2 minutes later, just as Simone was bringing the drug over to her, she calmed down and coughed, shooed away the “yukkies” and promptly fell asleep!  She then continued to sleep, moving slightly every now and again to get herself into a comfortable position, for the next 6 hours, finally waking at 5:30pm!  While she was sleeping, 3 members of the Rehab team came around to look at her.  They will be keeping an eye on her overall progress and work in conjunction with the other therapists.  They will also keep an eye on her pressure sore, so I am really happy about that.  Hopefully with all this help Tahlia will get her strength back and be back to normal really soon!

 Mum and Di had arrived around lunch time and sat with me until about 3pm in the hope that she’d wake up, but I could see mum starting to droop – I could see her head wasn’t too good - so I told them to go home, which they did. Mum brought her two gorgeous pairs of pyjamas and some special “plastic” bubble mixture (instead of a detergent base where the bubbles automatically pop and disappear, this special stuff allows the bubbles to stay intact and they become sort of sticky and plasticky!) as well as very pretty bow to put in her hair.  Di brought her a very pretty pink Christmas tree, a little plastic Dalmation dog and some pink Christmas balls, so her “room” is starting to look a little more Christmassy! After they left I dozed a bit and read my book, however just before they left, I went to the toilet and we were saying goodbye in the hallway and Anne, the Nursing Manager came down the hall.  I introduced her to mum and Di and she was nice and friendly and told mum what a good job I was doing.  As they walked out, she asked if I had a couple of spare minutes and we went into her office.  She brought up what happened the other day with Nurse D (not that any names were mentioned) and asked me if I could meet with the client services manager  and formally report to her what had happened.  I told her that I didn’t want to cause any problems and that basically Nurse D was good when she wasn’t distracted.  She told me it would be totally confidential and finally convinced me that I wasn’t doing the wrong thing by asking me how I would have felt if we’d had her on the first day that Tahlia was in here.  I hadn’t thought of it like that and the thought of her looking after another child in a critical condition in the distracted state she was in the other day, well that was a pretty scary thought as it could be incredibly dangerous.  Anne was really quite nice about it all and was very chatty and supportive of Tahlia and what we had gone through.  Maybe she had just been incredibly busy those first few weeks we were here and hadn’t had a chance to talk to us properly before now.  I guess I should give her the benefit of the doubt.  I had a chat with Kate later about formally reporting Nurse D and she said that she would write a letter (she was a journalist in a previous life!) covering what had happened and that we would submit that rather than sitting in a formal meeting situation.  I am really grateful to her for volunteering to do that as I really don’t want to have to have a “meeting” about it.  I know the matter needs to be addressed, but I certainly don’t want to be instrumental in having anyone sacked, especially as she is in such stressful situation, but again, I also don’t want anyone else with a critically ill child to be in any danger with her being so distracted.  Hopefully once we have submitted the letter they can let the matter drop.  Kate and I are both under enough pressure without the added hospital politics being added to the equation!

 (Kate has had a pretty stressful day today herself as one of her original surgeons admitted that he had made a mistake when they put in Willow’s stent as he accidently cut off a valve (I think that is what she said) and Kate is now wondering if that mistake has caused all of Willow’s subsequent problems (she had 3 cardiac arrests with subsequent organ failure and they were also told she had brain damage from it).  Will also did some research on a particular drug Willow is being given on the US FDA website and found that it is not approved in the US and can cause ventricle failure and shouldn’t be used in children.  Willow only has one ventricle so of course Kate and Will are frightened that this drug could be doing more damage than good.  They are both feeling pretty upset and angry that they weren’t given this information before and I don’t blame them.  They have all been through so much.  The only advice I could offer was to get Oliver (the Nurse Practitioner) to organise a formal meeting with all of their cardiac doctors and prepare a list of questions that they want answered.  The problem is of course that the hospital and doctors are afraid of being subjected to a law suit, so they are going to cover their tracks as best as they can and Kate is afraid that if they have time to prepare their responses to her questions that they may fudge the truth.  I don’t know how to help them – my heart truly goes out to them.  Kate is one of the bravest and strongest women I have ever met.   

As mentioned above, Tahlia finally woke up at 5:30pm and after changing a very very wet nappy (it hadn’t been changed since 8am and she had a diuretic in the morning!) we got her out of bed and put her in the pram, took the mask off and gave her some dinner.  She was happy and her breathing was excellent.  She did however cough pretty much with each mouthful of food, but managed to eat and clear her throat on her own.  Wade arrived just as she was about to start eating.  He thought he had to pick up mum and was quite surprised to find that Di had taken mum home hours before.  Poor guy – he had apparently sat in traffic for 2 hours to get here!  Anyway, I think he enjoyed seeing Tahlia sitting up and eating without the mask on.  She even said his name when I asked her to.  He stayed for about half an hour and after he left I thought she was working too hard so we put the mask back on, which she didn’t like, but she quickly settled down when I said she could stay in the pram.   She ended up having 50 minutes off the mask which was pretty good, although it was probably a bit too long – and she stayed in the pram for about 3 hours.  We played with some toys and watched a Dvd  (the trolley table is adjustable and can be adjusted to fit perfectly across her lap) until Scott arrived and then he played with her for a while until about 8pm when we put her back into bed.  I left shortly after and I wasn’t sure if she’d sleep at all tonight after sleeping all day, but when I came back up around 1am, Scott said she’d been asleep for a couple of hours and, as at the current time of 2:45am, is still asleep! 

Poor Scott though, he was again quite churned up when I got here.  He had fallen asleep earlier (he is so exhausted as he is working so hard at work and then of course coming in here) and was apparently snoring reasonably loudly.  That silly nurse from the last few nights that he doesn’t like came over to him and woke him up telling him he was snoring too loudly and that if he was that tired he should leave the room and go and have a sleep.  She called him “mate”, which also got his back up.  There was no need for her to do that.  I subsequently spoke to Kate and the nurse, who both said he wasn’t that bad and that he wasn’t bothering them.  Kate was angry herself with the nurse as she came over and woke Willow up as Kate was trying to settle her. I also heard her talking loudly and laughing at the top of her lungs half an hour ago – so she is completely hypocritical in so far as having a problem with noise.  The amount of noise that goes on here while children are trying to sleep from not only the equipment but the nurses too, is phenomenal – I really don’t know how the children manage to sleep through it all, but they pretty much do.  Once Tahlia comes home she should be able to sleep through anything!  Anyway, Scott didn’t need that.  He is going through enough as is it.  As he left he said goodbye to the other nurses and ignored the other nurse.  As he walked out the door she said “goodnight mate”.  He didn’t look at her but just said “we’ll have words another time” or something to that effect.   The joys of hospital living!!   

Anyway,  Tahlia finally fell asleep sometime after 5:30am and I must admit I felt pretty shattered after jumping up and down for the last hour and only having had a couple of hours sleep previously.  (I know I should try to go back to sleep once I get back up here, but after having gotten up and having a shower I am wide awake and can’t sleep anyway, so I might was well write down the day’s events, even though I should probably be sleeping!)  Just before the shift change though, a very strange event happened.  I was dozing when all of a sudden the alarm bells went off on Tahlia’s monitor and her heart rate had skyrocketed to 215!  It only lasted a couple of seconds, but there was no apparent reason why it happened.  She didn’t wake and her dots were all checked and working, so no-one knows why.  If it happens again it may be cause for concern, but for the moment they are not going to worry about it.  Very strange though – maybe she was having a bad dream?

 When the shift change occurred I was half awake and through blurred eyes noticed that Sharron was on, (which was fantastic as I know she is fabulous at looking after Tahlia and I feel very comfortable with her, so if I was a bit tired I knew I could trust her to look after her.  Even better it was a one on one today for some reason (we didn’t have to share with Willow as it’s usually one nurse on two patients when they’re not intubated), so Sharron was able to be totally focussed on Tahlia, although she was involved in training a young nursing student from Queensland who was down here on prac. 

 I nodded off while the hand over was happening and must have fell back asleep.  I heard the phone ring and Sharron answered it.  I knew it would be Scott checking in to get his first update on Tahlia for the morning.  She told him that I was tired and she would be sending me out of the room to sleep later!  Well that certainly wasn’t going to happen!  Luckily because I like her and I feel I can say anything to her, I told her in no uncertain terms that that wasn’t going to be happening!  She laughed at me but she knew that I meant it and didn’t push it any further.  Thankfully Tahlia proceeded to sleep through until 11:40am so I caught up with a bit more sleep throughout the morning.  At one point though, Sharron and I were chatting, and we looked over to Tahlia in the bed and saw her pretty much manage to turn herself over from her back to her side to make herself more comfortable.  It’s the first time I have seen her really move her legs in more than a slight shifting movement, so that was pretty exciting!  I must have fallen into a pretty deep sleep not long after that as mum apparently dropped in on her way to Hornsby (mum and dad were doing a special market at the RSL today) and I didn’t even notice.  She dropped off some food for dinner and didn’t want to wake me.  (I had no idea she been here until about 2pm when I said to Sharron that I was going to duck downstairs and grab something to eat.  Sharron said that mum had brought in lunch and then apologised for forgetting to tell me that she’d been here earlier!)

 Lisa from OT arrived just after midday, just as I about to get Tahlia something to eat (she’d of course missed breakfast).  That was fine though as she wasn’t that hungry and was quite happy to play for a while first.  Lisa brought up a small table that Tahlia can use while she is sitting in the red chair on the bed, which is great as she can play with her toys on it and later on will be able to use it to draw on.  She brought her up some more new toys, a dancing singing Elmo in a chicken suit! A dancing Tigger, and a singing pink pig money box which has large plastic “coins” that you slot into him.  Tahlia really enjoyed putting the “coins” into the money box and you could see a great improvement in her arm and hand movements as she was playing.  She loves the “gum ball” toy and Lisa brought a few more balls to use in it, so she had great fun putting the balls into the top of the machine and pushing the lever to make them all come out again.  The dancing/singing toys were also good for her coordination as they have a special separate bit “button” which can be placed on the table in a position where she can reach for it and press it down to operate the toy at her own pace, thereby giving her some independence too.

 After OT, we took the mask off and put her in the pram and gave her her lunch.  She was allowed to have two-three periods of one hour each off the mask today.   Unfortunately she began struggling a little bit half way through lunch and although she managed to finish it (pureed chicken and vegs) she was coughing a lot all the way through and was working reasonably hard by the end. I must admit I was getting a bit nervous feeding her as I was scared she might choke. When we put the mask back on (after only half an hour) and put her back in bed she got really upset and you could see the recession in her chest almost touching her spine!  We finally got her settled (thanks to another Dora Dvd – what would we do without Dora!!) but she couldn’t sleep because she kept coughing. 

One funny thing though was when Brad, the Nurse Practitioner, came over to her and told her that if she went to sleep, when she woke up he would take her over in the pram to look at the fish.  As soon as he told her to go to sleep she immediately closed her eyes. It really was very cute!  Unfortunately though, as I mentioned before, she couldn’t sleep because of the coughing, but she at least got some rest for a couple of hours.  At 3:00pm Tracy  came up and did some physio on her (I had just gone down to buy some lunch and when I came back she was there) and she did 6 good coughs on her own each time Tracy asked her to do one.  She stayed in bed and rested until 4:30pm when Brad came back and we put her in the pram and took her around to see the fish.  It really is quite an event to walk the couple of metres to the fish tank while she has the mask on as we have to take the trolley with the CPAP machine and stat monitor on it as well.  I guess a girl can never leave home without all her necessary accessories!!

 She loved looking at the fish and we even had to take her Dora doll to look too!  It was very cute when I asked her if she wanted to show Dora the fish and she lifted her up and turned her around so she could “see” the fish.  After that we went for a quick walk around the ward before coming back to the room to have some dinner.  Once again though, she struggled through dinner, coughing and working a bit too hard so we had to cut time off to only 25 minutes.  She really didn’t have much to eat, but they have now changed the feeds so that instead of having a continuous feed of 55ml/hour she will now be given “bolus” (one off) feeds  of 90mls of pedisure formula through the NG three times a day if she has eaten 100% of her meal or 165mls if she doesn’t eat much, with a continuous feed throughout the night.  So even if she didn’t actually eat much, she should still feel relatively full.

 Dr Elena came round shortly afterwards and told me that they had decided that because she had been so unsettled and coughing over the past couple of days that they wanted to have the LBO brought forward from next Wednesday to tomorrow.  In fact, they actually want to have weekly LBOs (I don’t know if that’s something Dr Cheng wants to do though).  Dr Simm told me previously that they don’t want to do too many too quickly as there are some risks in doing them too often (can get allergies to anaesthetic, can damage the cilia in the trachea), however Dr Rino and the other Intensivists, think that they can get on top of any potential problems quicker if she having regular LBOs.  I guess Dr Cheng isn’t going to do anything that he thinks is dangerous for her, so we really have to be guided by their decisions.  Dr Cheng was going to do a dilatation next Wednesday, but he will do it tomorrow instead.  Hopefully they will also be able to clear any secretions on her chest that are causing all the coughing so hopefully she will be able to have a good weekend! 

 Scott arrived just after 7pm.  He really is looking so tired.  On the upside though he has finally been given the go ahead on a big account he’s been working on, so hopefully that will take a little bit of pressure off him.  He told me tonight that he thinks Honey may be getting depressed as he just put his head on his paws tonight and looked up at him balefully as he was leaving.  He doesn’t know if we are coming back, and he must be wondering why everything’s changed and must be missing us.  Poor little thing.  I miss him too.

 Well that’s today’s events!  Scott said that she’d settled down around 10:30pm after physio (Anna came up and apparently did a good suction), so hopefully she will sleep the rest of the night.  It’s now 2:30am and she looks pretty peaceful.  I hope I haven’t just jinxed myself!  . . . she’s just somehow managed to  loosen the mask – I just heard a loud whoosh of air and went to check her mask and sure enough, it wasn’t sitting properly.  I fixed it and now she’s gone back to sleep.  I think it’s my turn now!

Another great day today! After sleeping through the rest of the night, she woke smiling around 8:45am.  Tracy from physio arrived about 9:15 and did some pats, but for the first time she didn’t have to suction her as she did some really good coughs by herself after some encouragement with the mask off.  We shooed away the “yukkies” and made a bit of a game out of coughing and of course lots of clapping whenever she did it.  Libby also had some stickers and she gave her one for each big cough, so she thought that was pretty good.

 She was allowed to have the mask off for 2 lots of 45 minutes today, so after she’d done her coughing she had breakfast and by the time she’d finished that the 45 minutes were up.  Mum arrived around 10am so we played and talked to her and she started imitating a few words again.  She said “Dora” all on her own, which meant that she wanted to watch a Dora DVD.  They had a Christmas market down in the entrance area of the hospital so I went down to see what they had and see if I could pick up any Christmas presents.  There wasn’t a lot, but I did pick some little handmade Christmas stockings filled with chocolates for $2 each and a girl’s colouring pack for $10 which included a Cinderella colouring book, crayons, apron, photo frame and notebook.  I also got a little pink trinket box with a butterfly on top for $4.

 When I came back up to the room, mum went out to have a quick look at the market and also to buy Tahlia some stickers.  While she was gone I was standing next to Tahlia talking to her when all of a sudden she said “Daro . . . choo!”.  I wasn’t sure what she meant at first, but then she said it again and I realised she was telling me that Scott had a cold!  Mum had been telling her that daddy was sneezing and that’s why he had to wear a mask last night on his face.  She obviously took in what mum had said and had to tell me.  It was so cute.  I grabbed my mobile phone and made a quick call to Scott in the hope that she might speak to him.  Unfortunately it went to voice mail, but he could hear her say “Dara, ahh choo” and “Bye Daro”.  He rang the room shortly afterwards and Libby answered the phone and put the phone next to her ear so Scott could talk to her.  I think it made his day!

 She had a rest and a short half hour nap from 1pm til 2pm and then Anna from physio came  and we did some more floor play which she enjoyed.  She was distressed initially getting out of bed, but once on the floor she managed to support her head really well and was even able to support her own weight on her arms for a short period.  We blew bubbles and she tried to as well.  She can actually blow, but it’s a bit hard with the mask on. However, I discovered that if I held the bubble wand just above her mouth, in front of the area on the mask where the CO2 comes, then it made lots of bubbles, which she thought was great.

 After physio it was bath time so Libby laid a couple of bluies (a type of absorbent change mat) on the bed and we gave her a sponge bath and then washed her hair (first time in over a week).  I’m sure it must have felt better as she’d scratching her head earlier.  Libby did a great job of washing her hair and after we’d finished she put her on my lap to cuddle while she braided her hair so that the pressure sore area could be unobstructed while they redressed it.  I cannot describe the feeling when she put Tahlia in my arms.  She had her facing me with her legs around my waist and her arms around my neck and her head nestled in my chest.  It was the best cuddle I have ever had.  I couldn’t contain my emotion and burst into tears.  I don’t think I even realised how much I’d missed holding and hugging her.  Libby was also overcome with emotion and had tears streaming down her face, as did mum.  It was a very emotional moment, but oh how worth it. While she sat there, Libby did a fantastic job of braiding and once that was done we put her in the special pram that Lisa from OT brought up on Brad’s request.  He was fantastic too in organising everything to get her out of bed.  He got a rechargeable battery pack for the CPAP machine and a portable stats monitor so that we could go for a short walk around the ward with the mask on, but as we still had a few minutes left with the mask off, we had our initial “walk” with the mask off.  She looked so beautiful sitting in the pram with her hair in braids, looking all pink and clean!  We just took her for a quick lap around the ward, with a stop over in front of the fish tank.  A few of the nurses saw her and exclaimed how great she looked.  She loved looking at the fish and Leanne said she could name the 3 yellow fish – we decided to call them “Dora, Boots & Swiper”!

 We came back to the room and she didn’t want to get out of the pram, so Brad said that if she was good and let him put the mask back on that he would come back in a little while and take her for another lap around the ward.  That seemed to satisfy her, so about 10 minutes later Brad came back and together with the trolley with CPAP machine, we went back to the fish tank – with me pushing the pram and Brad pushing the trolley.  It was a huge endeavour to go a couple of meters, but she certainly enjoyed it!!  Again she didn’t want to get out of the pram, so we left her in there.  Mum and I sat on the chairs with her facing us in the pram and we had a little play and chat.  Di arrived shortly after and as she came around the corner into the room she saw the bed was empty and assumed something bad had happened as she didn’t see Tahlia sitting there in the pram.  When she saw her there in the pram she was overcome with emotion.  She quickly recovered and gave Tahlia two presents which she enjoyed opening.  One was a pink octopus (the same as the blue one Sandra from Play Therapy had given her) and the other was a pretty butterfly clip.  She was a bit more interested in tearing up the paper though!

 I went to check if her dinner had arrived around 5:30pm (because we’d had such a busy morning she missed out on lunch – not that she was hungry when I asked her.  The reduction in steroids is obviously helping as she is no where near as agitated and hungry like she was last week).  It had so mum fed her dinner in the pram and she ate most of it (Pureed beef, gravy & vegs).  She coughed a lot while she was eating and sounded like she almost needed a suction, but she managed to keep coughing and cleared a lot of it herself – she is getting so good! She had the mask off this time for nearly 30 minutes.

 By this time she was looking pretty tired, so after dinner we put her to bed and she was asleep within minutes.  Brad and Lisa had organised for a new mattress to be put on her bed which apparently has air flowing through it which automatically moves in waves through the mattress thereby distributing and relieving the pressure on her head and body.  Hopefully that will help with the healing of her pressure sore.   She’d been asleep about half an hour when Scott arrived and she apparently slept until about 10:30pm when she needed a nappy change and unfortunately a bed change as the nappy leaked!  Gail from physio came in to check on her then too, and gave her a 5 minutes session of pats and two quick suctions.  When I arrived at 11:45pm I expected her to be asleep, but no, she was wide awake watching a DVD.  Scott said she’d had a bit of a meltdown half an hour earlier where she just got herself agitated after the suction and couldn’t calm herself back down.  Luckily when I came in she was lying there with a big grin on her face!  It’s now 1:15am and she’s finally asleep!  

 Poor Scott, he was so cranky when I arrived though.  Monique had gone on her break when Tahlia got herself upset and he was trying to calm her down when the nurse who was “babysitting” her came over to the bed, pushed her way in front of him, ignoring him, and proceeded in telling her to be quiet or she’d wake her baby in the other bed.  She kept calling her “Tali” and to add insult to injury, when she finally did acknowledge that Scott was there, asked him if he didn’t think he should go for a walk and leave the room!  He was so not impressed.  He held his tongue though, but he was pretty upset with her and I don’t blame him.  Sometimes the nurses forget that we are the parents and it is really hard to have to relinquish control to someone else, especially a stranger, and have them telling you what to do in relation to your own child.

 She slept for a couple of hours, but woke around 4:30am crying.  I got up and tried to calm her down, but the only thing that would calm her was putting on another Dora DVD.  She fell asleep but kept waking up crying and generally unsettled until after 5:30am.  Her “dots” (cardiac monitors) kept coming off too, so they kept the machines beeping!  Unfortunately our nurse was on her break during this time and the same nurse who was “babysitting” as before pretty much ignored us.  She came over the first time and asked if I needed help and I told her yes as I was trying to roll her over onto her side as she indicated she was uncomfortable,  but after that she just ignored us.  Just before Monique came back I heard Willow make a few coughing noises and she didn’t bother to get up and check her.  I was just about to get up and have a look when Monique came back – but it was funny, literally the minute Monique stepped back in room, the nurse bolted over to Willow and started fussing around her bed.  It was so put on!!

Physio were running a bit late and came at 9:30am instead of 9am, which was good as she woke up by herself.  Again, she wasn’t too thrilled about it, but did some really good coughs and Tracy removed a good amount over a couple of suctions.  She still sounded a bit rattly afterwards, but Tracy didn’t want to overdo the suctioning, so she thought it was OK to leave it and let Tahlia cough the rest away.  I have taught her how to “shoo” the “yukkies” away, so she thought that was quite funny and we’ve turned coughing into a game where she shoos the yukkies away afterwards and then waves goodbye!  She did some really good coughing on her own all day.

 The mask came off when Tracy suctioned and then we kept it off to have breakfast.  She did really well with drinking this morning but she was coughing a lot and breathing a bit hard while she was trying to eat.  It wasn’t anything to be too concerned about and she managed pretty well.  She sounds a bit like she has bronchitis when she’s coughing.  I thought she was tired and would have a sleep after breakfast and she did close her eyes for 5 minutes, but then stayed awake again until Desiree arrived for speech therapy at 11:30am.  We played mainly with the speech board, which she is improving at using.  Dad brought mum in and Tahlia was thrilled to see him and kept wanting to touch his moustache!

 After Desiree left, mum and I played with her with her Dora toys and then Lisa organised a weighing chair to be brought in to weigh her.  Mum or I had to sit on the chair first and be weighed and then Tahlia was to be put in our lap and then our weight would be deducted to find her weight.  I asked mum to do it as there was no way I wanted to be weighed in front of everyone!!  So mum got a 5 second cuddle – Tahlia really doesn’t like getting out of bed and gets a bit agitated.  Anyway, she has lost 0.4kg since she arrived and is now 16.6kg.  I was really surprised.  I thought she would have put on a couple of kilos because she looks so chubby at the moment, but Peter Cooper explained later that the steroids waste muscle and put on fat so even though she looks chubby, it’s not increasing her actual weight.  Once the steroids have stopped, the chubbiness/puffiness will quickly disappear.  Her heart rate has also been a bit high again today (150) so not quite sure why.  The doctors are aware of it but appear unconcerned at this stage as none of the tests have given any indication as to anything wrong.

 She slept for an hour and a half from 1pm when I had to wake her up for play therapy/physio. While she was asleep I went down to the hostel to make a couple of phone calls and finally caught up with Lee as every time he’s rung I haven’t been able to talk to him.  When I got back to the room, Wade had arrived so that was nice to see him. Unfortunately Tahlia could have slept a bit longer, but I thought it was something she would enjoy and also hopefully she would sleep better tonight if she was a little tired out. 

 Sandra and Tracy worked together today.  They put the play mat on the floor and Tracy sat Tahlia up against her.  She started holding her own head really quite well!  Sandra then gave her soft toy which was like a basket with 3 soft fuzzy balls in it and got her to pull out the balls and put them back in the basked which got her to her move her arms and head to look at things.  She then put some sorbolene cream on a board and they did some finger painting with it.  She really enjoyed that.  Sandra then read her a story while she lay on Tracy’s legs and we sang some songs.  It was such a nice fun experience for her.

 Unfortunately after physio she had to have the NG tube pulled out and replaced because it had been in for too long.  Lisa said that the tube was supposed to be replaced weekly – well it had only been changed once since we’ve been here!  Anyway there is a new tube which is softer and nicer and can stay in for a month, so she used that to replace the old one with.  I didn’t really want to be there when she did it, but Sandra stayed around and between the two of us we managed to keep her pretty well distracted while they did it.  She was so brave and  really coped well!  She is amazing.  I thought she’d be really upset, but she got over it all really quickly.  By then we were running out of mask free time, so we had to rush giving her (rather late) lunch.  She wasn’t overly hungry and only had a little bit.  It looks like the reduction in steroids is already starting to work as she certainly isn’t as hungry as she was.

 At 3:30pm Lisa from Occupational Therapy (OT came around with some toys and a big beach ball.  As Tahlia was still in the middle of lunch, she decided it would be better if she came back tomorrow, but she showed Tahlia some of her toys and Tahlia immediately fell in love with one of the toys which is like a big gum ball machine with the “gum balls” being little balls with little animals inside them.  She loved shaking the balls to see the animals and then putting them back inside the gumball machine.  Lisa said she could keep it until tomorrow, so she had some fun playing with it for a while afterwards.  OT apparently looks after developing the upper body through hand and arm movement, physio does the lower limbs and speech therapy the head.  Sue also advised that she was going to get rehab involved too so they would coordinate all the different therapies and make sure that all bases were covered.

 After Lisa (OT) left mum and I were playing with Tahlia when all of a sudden I thought I heard her say “shoo”.  I asked her if she’d said “shoo” and she nodded yes.  I asked her to say it again (thinking she’d said Shu Shu for grandma – however I think she was actually saying shoo to the “yukkies” as she’d just coughed!).  She did and then I asked her say Shu Shu, which again she did!  Mum and I were ecstatic!  I then asked her to say daddy and she said in a little scratchy voice “Daro”.  She then repeated every word we asked her to – Jo, papa, Di, Wade, water, woof, meow!  I felt like my heart was going to burst with happiness!  Di arrived shortly after and when we asked her, she said “Di”. 

 A few minutes later it was time for the mask to be put back on so Lisa decided to check the pressure sore on the back of Tahlia’s head before putting it on.  It looked dreadful – through the comfeel dressing it looked incredibly swollen and infected.  Lisa got one of the doctors to have a look and he said he would call Plastics again. 

 We then played with her for a while and got her to say all the words again.  Her voice is still very scratchy and soft but she is really trying.  She can’t seem to get her mouth around “m” and “n” words  (mum, nana), but did really well with all the others.  She has certainly moved ahead in leaps and bounds of the past 48 hours!

 Lisa was instructed to remove the current dressing so she and another nurse took the dressing off and cleaned it up. It looked a bit better afterwards, but still pretty awful.  They have fashioned a makeshift foam ring around the wound so that when Plastics do eventually come up they won’t have to take the dressing off again.  It’s not fixed to her head, the back of the mask is keeping it in place, so when it is taken off to eat it will have to be looked at again to make sure the temporary dressing is still in place  and Tahlia will only be able to have her head on the side and not in the middle.  She was once again so brave while they were cleaning the wound and only cried at the end.  Luckily mum and Di were there to help distract her and she was only upset for a little while.

 I felt pretty exhausted by the end of all this – watching her go through changing the NG tube and then the pressure sore dressing was pretty stressful.  I could see mum also felt pretty exhausted.  I hope she is OK, her head has been playing up again  and she really needs to get some rest.  I’m glad she’s going home for a few days next week as I think she needs it.  She has been so amazing.  I don’t think I could have coped without her.  She just manages to keep Tahlia smiling, which is the best thing that could happen to her!

 Mum and Di left around 6pm so Tahlia and I played for a little while and then I put on a Dora DVD and she settled down and fell asleep around 7pm.  Scott arrived about 15 minutes later and when I came back up just after midnight, he said she’d had an hour or so sleep and then he gave her dinner around 9pm.  He has unfortunately come down with a head cold from sitting under cold air conditioning at work, so he has to wear a mask around Tahlia.  Apparently she didn’t like it much, but it’s the safest thing to do. She woke up briefly when I came in and also again around 2am, but she settled back to sleep again pretty quickly, so hopefully she will continue to sleep through the rest of the night!

Today would have to have been the best day we have had so far.  Tahlia was just so happy today!  All we got was giggles and smiles pretty much all day, it was absolutely wonderful.  She has started doing more gestures with her hands, including tapping her teeth when she wants them cleaned, pointing at the speech board, wagging her finger in mock admonishment, shrugging when playing as if to say “I didn’t do that!” (she threw a her octopus toy on the floor for mum to catch/pick up) , cupping her hand around her ear when she hears a noise and of course rubbing her tummy when she’s hungry.  It is all so cute.

 She initially woke up at 6am – after sleeping all night - only because Marty woke her by changing her nappy and doing all her obs.  But she went straight back to sleep at 6:15am and slept through until 9:35am.  She must have been really tired!

 At 10:15am, Tracy, the physio, came (she is so lovely), and luckily mum and Wade at exactly the same time and of course were rewarded with huge smiles which made her forget all about what was about to happen and she got through the physio quite happily.  The mask was taken off for a quick suction (not a lot came up) and then after the suction we put her in the special chair and she had some weet-bix for breakfast.   Desiree came up in the midst of this and had her practice what she wanted with the speech board.  She was actually pointing at the right pictures, indicating what she wanted.  She is still very shaky and has a bit of trouble landing on the right picture right away, but she seemed to manage in the end.

 The mask was put back on at 11am, and after an initial grizzle, she settled down and was smiling again within minutes – thanks to Sue Sue (grandma!).  She played for a while with some of her toys and had a sleep for about an hour until 2:30pm.  For some reason, her lunch wasn’t entered into the system, so when I went to get her vegetables that I’d ordered, there was only a bowl of custard – which she didn’t want a bar of!  Sharron rang down to the kitchen, but no-one was there so she left a message.  Nothing had still arrived and no-one had rung her back half an hour later.  Desiree came up again and we told her we were still waiting for Tahlia’s lunch, so she said she’d chase it up.  After nearly another half an hour there was still no sign of any food, so Desiree ran down to the kitchen herself and brought up a frozen pack of pureed lamb and pureed sweet potato.   Sharron had to heat it up in the staff kitchen as there is no microwave up here and when she brought it back, I must admit it looked like cat food on the plate.  I very reluctantly started to feed her, and to my surprise, she ate every bit!!  She is also getting clever and holding the special cup Desiree gave her and drinking her thickened milk.  She cups both hands around the cup and while I guided her, she was able to bring the cup to her mouth when she wanted a drink.  I think she really enjoyed having a little bit of independence.  She had the mask for half an hour and tolerated it really well.  Again, when I went to put the mask back on she got a little bit upset, but Sue Sue kept her distracted and entertained again and the grizzles were short lived!

 Around 5pm we prepared a bath for her in one of the baby baths.  Dad arrived from home around the same time, and was greeted with a big grin.  She was a bit unsure at first but settled down and enjoyed it for a few minutes.  It’s a bit hard for her as she can’t support herself and keeps slipping down the bath, which in turn pushes her head forward so she can’t breathe as well which, of course, makes her a bit anxious.  It was nice though to be able to wash her properly for a change.  While she was having her bath, Sharron put mum and dad to work stripping and remaking the bed, which they were happy to do.  Dad had brought a present for her from their friends Sharon and Mike which was beautiful soft Christmas teddy bear.  She certainly has a lot of people thinking of her.

 After her bath she watched a DVD and then Scott arrived at 6:30pm, which once again elicited some beautiful smiles.   I left them at 7pm with Scott giving her her dinner of mashed potato, pureed carrot, pureed beef and gravy and pureed peas – delicious!  Still, she enjoys it and it will help to make her stronger.

 I came back up just after 11:30pm and Scott left shortly after.  He said she’d had a good evening and was good during physio at 10pm.  She had been asleep for an hour or so and has been asleep ever since, apart from waking for 5 minutes about 15 minutes ago (12:45am) as I think she was uncomfortable.  Sara seems lovely and helped me to change her nappy and roll her over to the other side.  She went back to sleep pretty much immediately so hopefully she will sleep peacefully throughout the rest of the night.

 Unfortunately she woke at 1:45am and decided she wanted to watch Dora!  I didn’t really want to put it on for her at this hour of the day, but if it keeps her calm and happy, I guess it doesn’t really matter at this point.   I ended up dozing on the chair and at one point woke up to find that the DVD had finished and she was asleep.  Next time I woke, the DVD was back on and she was watching it.  She finally went to proper sleep around 5am and then slept through to 9am!                                                   

Unfortunately Tahlia didn’t end up going to sleep until nearly 5am!  I don’t know whether it’s because we are feeding her in the middle of the night that either makes her more energetic or if it makes her feel uncomfortable, that keeps her awake.  The only way to calm her down and stop her whimpering is to put on a Dora DVD – which she watched until she finally fell asleep.  I must admit I was feeling a bit weary by then!

She slept through until 9am, when she had some weet-bix for breakfast and had the mask off for half an hour. She was really happy and kept smiling and giggling which was fabulous. Physio came around at 10:15 and although she was initially distressed, I managed to keep her relatively calm by telling her stories about things we had done together (like the seagulls stealing her lunch when we went to La Peruse a few months ago).  That helped to keep her mind off what was going on a bit.  She only needed 2 suctions, so that was good, but the physio we had was pretty ordinary – no personality and no real empathy with kids.  I cant remember her name, but she basically just stared into space while she was patting Tahlia and offered no words of encouragement or tried to calm her down when she got upset.  You would think that working in a childrens’ hospital that it would be a prerequisite that you had to look at things from a child’s perspective and treat them with some empathy!

 Anyway, after physio she slept for nearly an hour and a half until midday when she woke up quite happy and smilely and we took off the mask and gave her some lunch (pureed lamb and gravy, mashed potatoes and pureed sweet potato – she didn’t want a bar of  the custard and pureed pears!).  Unfortunately happiness was short lived because after having the mask off for half an hour we had to put it back on and when we did she absolutely lost it!  She didn’t want it back on and just cried and cried and cried for nearly an hour and a half!  Jasa and I tried everything – Dora DVDs, games, toys, singing, talking to her and eventually having me cuddle her in the chair – but nothing worked.  When Jasa asked her if she wanted to get back into bed while I was cuddling her, she nodded yes.  When I asked her if she wanted mummy to cuddle her, she nodded no.  I know she loves me and it doesn’t mean anything, but I really felt so sad.  She is obviously feeling so insecure at the moment that she prefers the safety of her bed to cuddling with me.  Jasa at one point asked me if it would be better if I left the room – I know she meant it only in so far as did I think she would settle better  - but that comment really cut me.  I like Jasa very much and she has been an excellent nurse, but I felt like crumpling in a heap from that comment.  To have your child, who you love so much, not want to be held by you and then to have it intimated that maybe she might settle if I wasn’t there was really too much for me today.  I am feeling pretty emotionally exhausted right now – this has been the most gruelling month of my life.

 Anyway, when we put her back into bed she fell asleep straight away, but was unsettled and woke again about 15 minutes later, coughing and breathing quite heavily.  Dr Carmen came into check on her and was quite concerned when we said how upset she was.  When we put her back to bed after sitting on my lap, we put a pillow under her head, so Dr Carmen suggested removing the pillow – once it was removed she settled again and her breathing and recession eased off considerably after about 15 minutes thank goodness.  Once she had settled, Jasa “ordered” me to go outside the room for 5-10 minutes to catch my breath.  She knew how upset I felt and I couldn’t help a few tears once Tahlia was asleep.  She was so lovely and gave me a hug and told me I was a really good mother.  That helped a bit.  Sometimes I feel so completely inadequate and out of my depth.  Even though I know it’s not the case,  living in this kind of environment can make you feel that everyone is watching you and your skills as a mother and sometimes you feel you are being judged and maybe found failing.  I know I‘m probably just being silly and paranoid - but it does help to be told you are doing a good job every now and again.  So I went downstairs and bought a coffee from Starbucks and came back about 10 minutes later.  It did help a bit to get out of the room and collect myself, I must admit.

 She had been asleep for about half an hour when Scott arrived at 3pm and was starting to stir and cough a bit, which woke her up.  When she saw Scott a big grin came over her face – it was wonderful to see.  Physio arrived a couple of minutes later, which was actually good timing as you could hear her breathing starting to rattle a bit.  Unfortunately it was the same girl as earlier and her demeanour had not improved! Tahlia started to get really upset and cried when she saw her, but somehow I managed to keep it from escalating into a full scale attack by talking to her again and playing with the new “Dora Ice Cream Shop” that Scott brought her. She managed to get through physio without too much stress and is actually starting to cough a lot more on her own and with lots of praise, was actually trying to cough when we asked her to.

 I left the room just before 4pm, so I will be able to get a few more hours sleep than usual, which will help, and will relieve Scott around 11:00pm.  I know he is still pretty tired and that work is pretty stressful at the moment, so he needs as much rest as he can get.  Apparently Honey was sick again today, so I hope he is OK.  The weather has been incredibly hot for the last week or two so that’s probably not helping.

 I got back up here about 11:45pm and stood waiting to be let in for about 5 minutes.  I had to ring the bell 3 times before someone opened the door.  At this time of night it’s a bit frustrating having to wait, but I totally understand that security measures need to be in place and when they are busy with patients they have to come first – still, at midnight, all you want to do is get inside!

 Scott said that she’d been good until about 15 minutes before I arrived when she abruptly woke up literally screaming!  She had just gone back to sleep when I walked in so I hope she manages to sleep the rest of the night.  Poor little thing, she has just had enough I think.

Tahlia woke briefly at 7:30am and then slept through to 10:15am.  She certainly had some catching up to do!  Alan rang around 8am to check on her and told me that he was preparing to do 3 dilations over the next 6 weeks – one in about 10 days time, one just before Christmas and one after Christmas.  This involves inserting a balloon into the windpipe for approx 45 seconds to stretch out the narrow area. The only problem is that of course there is some danger because the trachea is so fragile and also the more times they have a look and put something down the trachea they are damaging the small cilia (hairs) that line the inside of the trachea and help to move mucus etc.  We just have to have faith that it will all be OK. 

 After she woke up we took off the mask and had 2 weet-bix and we kept the mask off for 15 minutes.  I then put it back on and she went back to sleep for an hour until midday.  At 12:20pm she started to sound a bit noisy, like she used to when she had audible stridor.  Jasa did a suction but didn’t get much and in fact the stridor got a bit worse.  She called Dr Carmen  to check on her and they turned up the BIPAP again.  She settled down about 20 minutes later.

 At 1:20pm she had the mask taken off again and had some lunch (pureed beef and gravy, mashed potatoes, pureed peas and pureed sweet potato), which she really enjoyed.  She then went back to sleep from 1:55pm until 3:30pm. 

 Mum and Di brought lunch in and stayed for a couple of hours. They brought a birthday cake for Scott and Di brought him in a gorgeously wrapped present which Tahlia enjoyed opening later in the evening!  Tahlia was full of smiles and giggles and interaction.  She made “cheeky eyes” at us and when Di asked if she could kiss her hand, she shook her head no and started wagging her finger at her in “tut tut tut” gesture!  It’s so cute!

 At 3:45pm she decided she was hungry again and wanted weet-bix so we took the mask off for 25 minutes and she ate nearly 2 weet-bix with some pureed peaches.  Once she had finished and the mask was back on (we managed to put it back on without the usual tears and stress) she started to fall asleep but then woke herself back up and wanted to watch a Dora DVD.  Mum and Di left so we watched Dora together until the physio, Gail, came at 5pm.  She did really well this time with the physio in so far as she didn’t get too upset and fell asleep for 15 minutes when she’d finished physio.

 At 6pm the mask came off again for 20 minutes for dinner (pureed lamb and mashed potatoes and pureed carrots) and again she was pretty good about letting me put the mask back on afterwards.  We watched some more Dora and the Scott arrived around 7:45pm.  He looks absolutely exhausted!   Honey apparently made his day when he vomited all over the edge of the family room rug – couldn’t have possibly done it on the tiles! So he had to clean all that up before he left.  The temperature has been in the 40s so maybe Honey is being affected by the heat.  It was pretty hot for Scott to sleep too.  I think he’s a bit over the animals at the moment! We opened his presents and Tahlia helped to rip the paper.  It wasn’t quite the 40th celebration I had envisaged for him, but we tried to make it nice.

 I eventually got down to the hostel around 9pm and heated up some dinner that Di had brought me.  I finally got to sleep around 10pm and got up at 1:30am, had a quick shower and came back up to Tahlia’s room to find her wide awake, big smile on her face and rubbing her tummy!  She didn’t want custard or ice cream, only weet-bix!  So I prepared her one weet-bix and after she’d finished it she seemed pretty satisfied and was reasonably happy for Scott and I to put her mask back on and settle down to sleep.  Only problem was that she didn’t want to go to sleep! 

At this point in the proceedings (3:30am) she is still awake watching Dora!  Scott left after she’d eaten, about 2:30am.  I hope all is quiet at home for him tonight!

Tahlia has had a good day breathing wise thank goodness, apart from the earlier stridor, so it seems that yesterday’s LBO made a difference.

After on having an hour or so sleep, I was feeling a bit weary this morning when Dr Simm came around about 7am.  He looked at Tahlia and asked how she had gone overnight.  I told him she had been terribly unsettled and fretful all night but that her breathing seemed OK.  He said then that they wouldn’t proceed with the LBO this morning then after all.   Around 7:45am the ICU doctors did their rounds and then Alan and his team arrived shortly after.  He said that they’d hold off on the LBO as she seemed OK, but about 10 minutes later he came back and popped his head around the curtain and advised that he had discussed Tahlia with the ICU Intensivist and they had decided that they should proceed with the LBO tomorrow morning just to make sure that there was nothing wrong.  He said she could be put back on feeds and have some breakfast.

Around 8:15am Tanya, the physio, came around and although Tahlia wasn’t happy about having the physio, she was a little less stressed this morning.  The same nurse D from yesterday was on again today, which made my heart sink.  As usual, she was no where to be found when I needed her, so luckily the physio helped me settle Tahlia into her special chair to have some breakfast.  I took the mask off and started feeding her some weet-bix, which, as usual, she devoured!!  Just before she finished, Anne, the Nursing Manager, came into the room and abruptly said that I shouldn’t be feeding Tahlia, that it had been decided that she was going to have the LBO today.  I told her that Alan had popped around and said that they had scheduled it for tomorrow morning and she said that it wasn’t up to Alan to schedule it, it was up to the ICU doctors!  The way she spoke to me it was if I had done something wrong.  It certainly got my back up, but I stayed calm and told Tahlia that she couldn’t have any more.  Luckily she had pretty much finished it all anyway!

Nurse D came back from rounds and I told her what had happened.  She started aspirating Tahlia’s tummy to get the breakfast out and I said that Alan had said she wouldn’t be having the LBO until tomorrow so couldn’t she please find out what was happening first before she started taking the food back out of Tahlia’s stomach.  She suddenly got all stressed and teary and said “I don’t know what to do” – well that was comforting!!  Next thing I know she starts pouring out her heart to me saying that the Nursing Manager is horrible and is trying to get of her because she has a compensation claim happening because she hurt her back (I think I may have mentioned earlier that she is on an 8kg lifting restriction – very handy when Tahlia is at least 17kg!!).  Anyway, she is having all these problems trying to get her money and apparently the house she is renting is being sold and she has to be out by Christmas Eve and she doesn’t have the money for the bond for a new place and is counting of her compo money which is being held up for some reason. I did feel sorry for her, but this is not the place to be distracted with personal problems – it’s ICU for goodness sake!  I didn’t know what to say or do.  Next thing, Anne comes back around, all nice and apologetic that there have been mixed signals with what is happening.  She said they were waiting for rounds to be over when  Dr Reno, the Intensivist on for the next week (like Dr Schell, Dr Egan etc), would come around and let me know what was happening. 

 I rang Scott and he said to page Alan.  I spoke to Nurse D and asked her to page Alan, but she said that Dr Reno would be around soon and basically indicated that I shouldn’t bother Alan.  After she left the room (again) I asked Natalie (who thank goodness was on again) if she could have Alan paged, which she said yes.  When I still hadn’t heard back from Alan, I decided to ring Sue, Dr Cooper's assistant.  I didn’t tell Nurse D who Sue was, so she paged her for me.  Sue rang back shortly after and I explained that I didn’t know what was going on – one person was telling me she had to have the LBO today, while Dr Cheng himself had said tomorrow!  I just wanted to know so that Tahlia didn’t have her food cut off for no reason.  As I said before, she is constantly hungry because of the steroids and I didn’t want her fretting all day if she wasn’t having the procedure until tomorrow!  Sue said she would find out for me straight away.

 Anyway, finally around 10:50am, Dr Reno came with Sue and apologised for all the mucking around.  It had finally been decided that she should have the LBO tomorrow.  He seems really nice and apparently has been on leave for a month and has just got back, but he knew of Tahlia before she came in and has brought himself up to date on her progress to date.  He seems pretty switched on and I felt quite confident in him.

 At 11am the ward had a visit from Santa Claus and Captain Starlight and a cast of about half a dozen characters. Tahlia was asleep when they arrived and I debated about leaving her to sleep, but I thought she might benefit from the distraction of having something nice happen so  I woke her.  Santa came over to her bed.  I thought she may have been a bit scared, but although she was a bit solemn, she handled it well.  They gave all the children presents – she got a funny soft toy animal (we couldn’t work out if it’s a giraffe, cow, reindeer or what it was, but she likes it) and shortly after mum and Aunty Carol arrived.  Mum was disappointed she missed out on Santa!

 We then gave her lunch (mashed potato with pureed chicken and gravy and sweet potato), which, as usual, she demolished!  She much prefers her vegetables to sweet stuff (mum asked her later if she wanted vegs (and listed a whole range of different vegetables, which she nodded her head “yes” to ) and if she wanted sweet things (custard, ice cream etc), which she shook her head “no” to.  It was quite funny.  She then slept for about 15 minutes before waking up again.

 At 1:30pm Tanya from physio came up to see her. Instead of doing the usual pats and suctioning, she had organised for a “play mat” to be put on the floor.  Just getting out of bed and moving around a bit is apparently just as good physio as patting.  She put down some toys and then lifted Tahlia out of bed and sat on the floor with Tahlia sitting and leaning up against her. Tahlia was actually able to support her own head for a very short time, which was fantastic to see.  She had a “giraffe” tower which you put blocks into and she spent 5 minutes or so trying to pick up the blocks and drop them in the tower.  Her co-ordination is still quite shaky but she did manage it in the end.  We were so proud of her! 

She then started to get a little irritable, so Tanya laid her on her side on the floor.  I lay down opposite her and tried to get her interested in playing with some of the toys but she wasn’t really interested.  After another 5 minutes or so Tanya decided she had probably had enough for one day and prepared to lift her back up and put her back in bed.   And then she had another “episode”.  She started struggling to breathe and of course got scared which exacerbated the problem.  She was gasping again for air and looking at me to help her.  It the most helpless feeling you can ever imagine.  I think it scared Tanya too.  Thank goodness, once again, Natalie was around – Nurse D had disappeared again (she never once told me when she was going on a break) and between all of us we managed to calm Tahlia down.

She was absolutely exhausted by this time and breathing quite hard.  One thing that was quite strange today also was that her heart rate suddenly returned to a more normal rhythm – sitting around the 120s.  Don’t know why!  Anyway, she tried to go to sleep but once again couldn’t.  By 3:30pm she was still working a bit too hard, so I made Nurse D get the doctor to check on her.  Di arrived in the middle of this and she gave Di a huge smile – but continued to breathe hard (the doctor was curious to know whether she worked hard only when she was anxious or upset or whether she was purely breathing like that).  When she saw that Tahlia was happy and relatively relaxed and still breathing hard, she went and spoke to Dr Reno.  He came and looked at her and decided that he should call Alan.  He felt that she wasn’t going in the direction that she should have been and that there may be something causing it.  They put the BIPAP pressures back up again and that really helped, but as he said, they want to decrease the pressures, not keep putting them up, so they needed to find out what was going on.  He felt that they should proceed with the LBO tonight rather than wait until morning.

 (Shannon, Kate’s mum came over to see how Tahlia was doing and brought her a present of a Fisher Price Talking phone.  She thought because Tahlia is so tactile at the moment that she might enjoy pushing the buttons – she is such a lovely kind lady.)

Dr Reno came back to see me after he’d talked to Alan and advised that they had decided to proceed with the LBO tonight.  There was some concern that because she had eaten lunch and had been on continuous NG feeds that it would affect the anaesthetic, so she probably wouldn’t have the procedure until 10pm tonight.  It was a bit of a worry that it was that urgent if they couldn’t wait a few more hours until morning to do it, so it must have concerned Dr Reno as they don’t make those decisions lightly.  I rang Scott and let him know and luckily when he arrived Dr Reno was here so he was able to explain directly to Scott what was going on.  Before that though, one of the anaesthetists came round to check on her and voiced her concern about putting her under anaesthetic after less than 6 hours fasting.  She couldn’t understand why it was so urgent as Tahlia looked quite peaceful.  She decided to put her case to wait until tomorrow to Dr Reno, but came back shortly after and said that it was definitely proceeding and that it would be around 7pm.  Dr Reno and ENT didn’t think that they’d find anything really bad but that they needed to be sure now rather than risk another episode where she crashed at say 3am!

 Sue came back to visit later in the afternoon and I decided to ask her if there was any way you could request not having a particular nurse.  After talking to Kate earlier and knowing that she felt the same way I did about her time away from the ward and long phone conversations (she also spoke to another mum on Edgar Stephens Ward who, when Kate described how slack her nurse was, promptly asked “was her name Nurse D?” and when Kate confirmed that the other lady agreed that she had been hopeless with her too!), I decided that I didn’t want Nurse D looking after our girls again tomorrow.  I truly feel sorry for Nurse D and hate doing this.  I don’t want to get her into any more trouble than she already is, but Tahlia’s welfare is the primary consideration and I will not have that compromised.  I explained to Sue what had been happening and said that when she was not distracted by her problems she was quite a good nurse and quite nice, but that I didn’t want someone looking after my child if she wasn’t focused on the job at hand.  Sue agreed and said that she would speak to someone on my behalf.   It’s an awful feeling to do that and I am cranky that I now have that extra level of stress on what has been a particularly stressful week.  I don’t want to get her into trouble and said to Sue that she could even say that it was because of the weight restriction that I requested someone who could lift her because my own back is not great to be able to lift her in and out of baths and chairs.  Anyway, we will see what happens tomorrow. 

 (One other incident that confirmed I had done the right thing in requesting her to not have us tomorrow, was that as Tahlia was about to be taken to theatre, I discovered that the IV cannular was leaking (it also happened previously last night when Christian was looking after her) and it had absolutely soaked the pillow that was under her feet.  She should have checked all that before it was time to go to theatre!   So she had to have another cannular put in her other foot!  Mum also made the comment that you only ever saw Nurse D doing something when there was a doctor in the room.  The other lady that Kate spoke to also said the same!

 So, to cut a long story short . . .I guess it’s probably too late for that! . . . Tahlia was taken in to have the LBO.  I went with her through the theatre but couldn’t go in with her this time. As they wheeled her off she was crying and it just broke my heart.  (The anaesthetist said later that she had another “episode” as she was removing her pillow, and the thought of her going through that without me there to comfort her actually made me feel physically ill).  Scott and I went down to the Hostel and had some dinner that Di had made and then went back up to ICU.  She had been gone a little over an hour when they said she was on her way back.

 Apparently they had discovered a patch of “slough” on the trachea which could have been causing the intermittent blockages.  The opening is still in a figure 8 and it may need widening at some stage as it is quite small in the middle.  They also felt that when Tahlia’s head is in a down position that it could be making the “figure 8” collapse more which could also be causing the “episodes” of struggling for breath.  She now has to keep her head in a more upright position.  Apart from that they were happy with the repair and hopefully removing the “slough” and giving her some more antibiotics will help her manage better. 

 She woke briefly and cried when she came into the room, but settled pretty quickly and has been asleep ever since.  Having a good night’s sleep is sure to help. (her heart rate is actually at 102 – the lowest I’ve seen it in days!)  Speaking of which, it’s now nearly 4:45m, so I probably should try and get a couple of hours!  (I only had 3 ½  hours earlier downstairs after Tahlia had settled).

(Scott left here just after 2am and he sent me a couple of texts around 3am saying that Honey had had diarrhoea and he’d had to bath him and put on a load of washing, then he was running around trying to kill two “cha cha’s” (Tahlia speak for cockroaches!).  What a lovely start to his birthday!  Oh yes, the nurses on tonight ( Sally, Nimmy and Lisa) all came around to him at midnight and sang him happy birthday.  Lisa presented him with a “cake” made out of rounds of bread held together with chocolate ice cream and decorated with lollies!  It made his day!

Where to start . . . well the day started off pretty good.  Tahlia woke just after 7am and physio came round at 8am.  As usual, she didn’t like it, but managed to get through it with the minimum of fuss.  At 8:20am we took the mask off and she had breakfast (2 weet-bix with pureed fruit).  She loved it!   After breakfast, she indicated that she was tired and wanted to go to sleep – however, she only managed a couple of minutes before waking up again and becoming unsettled. She tried again at 10am to sleep, but again she couldn’t settle.

 At 10:25am she indicated, by rubbing her tummy, that she was hungry again and that she wanted some “share”.  Mum and I sat her back in the chair again and gave her some ice cream and she watched a “Dora” DVD.  She finally fell properly asleep at 11:45am and slept   through until 12:50pm.  Unfortunately, Sandra the play therapist came while she was asleep so she couldn’t do anything with her, but she left a number of toys for her to play with.

 At 1:40pm we took the mask off again to have some lunch – mashed potatoes, pureed carrots and some pureed lamb & gravy – she loved it!  She kept the mask off until 2:25pm and then we put it back on her.  She didn’t like it much and got a bit distressed when we did put it back on, however at 2:45pm she settled down for a sleep  . . . . or at least tried to.

20 minutes later she was still unsettle and fretting so I played around with the mask and moved it a bit and she seemed to settle again, but only for about 15 minutes, when again she woke unsettled and crying,

 I spoke to Donna that her heart rate was still quite high (in the high 140s and 150s) and that I was concerned about it.  She went and spoke to the cardiac reg who came and assessed her around 5:30pm and agreed that something wasn’t quite right so they would do some blood tests and order another chest x-ray to see if there was anything wrong.

 At 5:45pm I started giving her some dinner (some mashed vegs) when suddenly she began to work a bit harder.  I stopped feeding her and asked Donna to check on her and put the mask back on her. She started gasping for breath and her oxygen stats started dropping.  She scares herself so that makes it even harder for her to breathe – not to mention scaring the pants of us!!.  Mum was there when it happened and was pretty upset, as were I.  It’s so scary to see her like that – you just feel so completely helpless and she just looks at you with those big eyes as if to say “why aren’t you helping me?”.  The episode only lasted a minute or two, but it left her pretty exhausted. 

 Kate brought Willow over to see her a little while later and the two little girls had a lovely few minutes just looking and smiling at each other.  It was very sweet to watch.  (Kate’s mum Shannon, arrived yesterday which is lovely for Kate.  They are such a warm and loving family and have just been so lovely to Tahlia.  Shannon brought her a little “fairy mouse” from the gift shop this morning which was so kind).

Dr Schell and the Cardiac Reg called Dr Simm from Alan’s team to come and check on Tahlia to see if they could find a reason for Tahlia’s elevated heart rate.  They took some blood from her foot for blood tests and she had the chest x-ray.  They also gave her an adrenalin neb to help her airway .  Dr Simm came and assessed her and, after discussions with all the other doctors in ICU and with Alan, it was decided that an LBO be scheduled for tomorrow morning.  If she was settled through the night and morning, then it could be cancelled if necessary.

 After Scott came, she apparently settled and had a couple of hours of sleep until physio when she woke up.  When I came back at 1am she was rubbing her tummy asking for food again.  She was due to be nil by mouth at 2am (in preparation for going into theatre in the morning if necessary), so Christian said it would be OK to give her some custard which would hopefully tide her over.  So I took the mask off for about 10 minutes and gave her some.  She really enjoyed it and I thought would settle afterwards and have a sleep, but no, she was terribly unsettled about half and hour later and continued fretting and waking until 4:45am, when she finally fell asleep exhausted in front of a Dora DVD.  It was a very very long night!!

 I didn’t get a chance to write down today’s events because I was up and down with her all night, so I have probably missed a few events of the day (it’s now 2:45 am on Saturday morning), but one thing that I certainly do recall was the strangeness of our nurse all day.  When she came in in the morning, she took a phone call at our bedside.  Mum and I tried not to listen in but it was a bit hard and she was on the phone for at least 10 minutes.  She was obviously having some problems with her pay (she was complaining she hadn’t been enough money) and was in the midst of some personal issues (not having somewhere to live by Christmas).  We didn’t like to pry so we just continued our own conversation and tried to ignore hers.  Throughout the rest of the day though, she was never around!  Whenever you looked for her she was on a break or out of the room or on the phone!

 Peter Cooper came to check on Tahlia in the afternoon and was asking her some questions (I asked him about long term effects of steroids and he said that there shouldn’t be any.  He said that he thought the reason she was so unsettled at the moment and so fretful was because of the steroids as they can cause “steroid rage” and can make you feel really hungry and irritable.  He is looking at reducing the amount as he is concerned she is still on too much, so hopefully that will help her settle a bit more over the next few days.  Poor little girl is dealing with so much!).  In the middle of this the nurse's mobile phone rang and she excused herself and disappeared for the next 15 minutes behind the curtain in the corner of the room where the sink is.  Peter actually looked around for her a bit later to ask her a question and jokingly commented on the shoes peeking out below the curtain.  Kate and I discussed the nurse later and Kate was also cranky with her and agreed she had hardly been around today - she had put nasal prongs on Willow when she shouldn’t have and did something wrong with her medication -  if it hadn’t been for Natalie the other nurse in the room (who was looking after a tiny baby and shouldn’t have had to help us), I don’t know what we would have done.  You just couldn’t find her!!  When she was around, she was actually quite nice, but she would say she was going to do something and then forget about it.  Mum was getting quite cranky about it –as was I!

The 3am physio went fine and she stayed pretty calm and settled throughout most of it.  She didn’t need too much suctioning, so she pretty much fell asleep quite quickly afterwards.

 She woke up just after 7am, when the nurse gave her the budecinide neb.  At 8am, Annie, the physio, came back to see her and, again, she handled it quite well and didn’t seem to need much suctioning.  At 8:50am I was able to put her in the special chair and give her breakfast – finally!  Practically from the moment she woke she was rubbing her tummy to indicate she was hungry!  We also took the mask off and she was breathing really well and ate a good breakfast of 2 weet-bix and pureed pear and a small drink of thickened .  At 9:20am we put the mask back on because the doctors don’t want her to have any more than half an hour of. 

Unfortunately Desiree from speech therapy came literally 2 minutes before she had to have face mask put back on.  She has put together a special sound box which has pictures of things Tahlia likes ie weet-bix, custard, share and also pictures which represent saying “yes please” and “No, thanks”.  This is to help her speech and also to be able to communicate more effectively her needs and wants.  I have to teach her to recognise the pictures and then when it’s say breakfast time, I can get her to touch the picture of the weet-bix and the box will actually say the words “weet-bix”. Desiree is going to come back and take photos of her DVDs and books and then they can be added to the selections.   It’s a really great idea!

 After Desiree left, Tahlia was pretty tired and I put her back to bed.  She then slept from 10am until around 11:30am and had literally just woken up when Mum arrived.  The look on Tahlia’s face when mum came near the bed was just priceless.  If there was a picture to represent a beaming child, then Tahlia would have had to be it!  A huge smile lit up her face and for the next half an hour all she did was smile and giggle to everything mum said.  The feeling of seeing her so happy after weeks of being sick and scared was absolutely indescribable.  It was just wonderful!

Dr Cheng and Dr Arji (?) popped in to see how she was doing and are quite pleased with her.  Alan mentioned that she was getting a bit puffy (which is from the steroids) and asked about how well she spoke at home before she had the operation as there was apparently some concern from a few people about her lack of speech at the moment.  He seemed quite reassured when I told him she was speaking a few words before we came in.  I also mentioned my concern about her increased heart rate and he said he’d discuss it with cardiac, but didn’t seem too concerned.  Again, the plan is to try and get her back on CPAP, with the aim of increasing the amount of time she has without the mask.

 Around midday we  decided that she should have a bath, so Christian filled up a baby bath and with mum’s help we were able to give her a bit more of a wash rather than just a simple sponge bath which is all she’s had in the last 4 weeks.  Christian had to hold her up and mum and I trickled water over her and gave her a bit of a wash.  I showed her how to splash her hand in the water and she started splashing us.  It was very cute!

 After she was dried off and dressed I sat in the chair and held her while mum and Christian changed the sheets on her bed.  It was so lovely to cuddle her.  After the bed was made, mum sat down beside us and we sang her some songs (5 little ducks, incy wincy spider among others) and then Annie, the physio finally arrived at 1:15pm (poor Tahlia had been repeatedly rubbing her tummy, indicating that she was hungry, since she pretty much woke up!)  She did well again with physio, ie. not too much grizzling, and there wasn’t much to suction.

 We sat her up in bed after that and she finally got her lunch!  Boy was she hungry!  She ate a whole serve of pureed carrots, half serve of mashed potatoes and a couple of small spoonfuls of pureed lamb and gravy (that smelt delicious – not!!).  After that she demolished a carton of ice cream and a few spoonfuls of custard and a mouthful of thickened milk!  By this time the half hour she is allowed off the mask was up, so amidst some tears we had to put the mask back on.  It was now 2:15pm.  She settled down reasonably quickly and closed her eyes for a sleep (she was pretty exhausted after everything she’d done this morning), however after a couple of minutes she became unsettled again and woke up.  She started working a bit harder, so I asked Emma, the nurse who was relieving Christian while he was on his break, to check on her.  We decided that she may need a suction, which she did, but she didn’t get remove a great deal.  She seemed to be breathing a lot more through her mouth and I tried adjusting her mask a few times,  in case it was blocking her nose, but it didn’t seem to make much difference.  When Christian came back, he gave her the budecinide neb, which seemed to help a little bit, but she still worked hard for a while after.  Mum thought we should move her on to her other side and once we turned her she settled right down.  By now it was 3:40pm! 

It is now nearly 5pm and she is still resting peacefully.  Peter just came to check on her and I asked him about her (still) slightly elevated heart rate.  She is currently resting on 133 and has been sitting in 140s and higher most of the day again.  He is unsure as to why this is happening and said that it’s something cardiac should look at.  He also commented that Tahlia’s face is looking quite puffy – which it is – and that this is because of the steroids that she’s on.  Her increase in appetite can also be attributed to the steroids as they apparently make you really hungry.  Once she is off the steroids, her weight will settle back to normal, but in the meantime she needs these steroids to keep her airways open.

 Wade arrived to pick up mum just after 5pm.  As soon as Tahlia woke up shortly after she looked up and saw Wade and a big grin spread across her face.  After mum and he left I played with Tahlia for a while and then she had dinner of custard and ice cream with the mask off for 10 minutes.  Scott arrived just as we were settling her down for a sleep and she was really happy to see him.  I left shortly after he arrived and went downstairs for a few hours sleep.

 When I came back up just after 12:30am, I found Tahlia wide awake grinning at Scott and rubbing her tummy.  Apparently she had been doing that for while, so when Jason got back from his break a few minutes later we got permission to take the mask off for another 10 minutes and give her some ice cream.  She was smiling and chuckling and really enjoyed it.  She wasn’t too happy when the mask had to go back on and unfortunately hasn’t really settled to sleep since.  It’s now 2am and she is still a bit unsettled – it doesn’t help though that one of the nurses in the room has settled in for a chat with another nurse and is talking as if it’s the middle of the day and not the middle of the night!!!!!

The 3am physio went OK, but of course she got distressed and was crying.  It’s so sad to watch her.  I know she’s getting scared every time the physio comes because she knows that she’s going to have to be suctioned afterwards and she really hates it.  She finally got to sleep around 4am (as did I) but she woke around 5am and was rubbing her tummy in a circular motion - she has learnt to rub her tummy to indicate that she’s hungry!  I had to tell her that it was still sleep time but that she could have some breakfast soon.  She seemed to accept that and went back to sleep until 7:30am.

 After she was awake, I changed her nappy and she had a neb and then Jason and I put her in her special chair.  Once she was settled we took off her mask (8:20am) and I gave her some porridge.  She didn’t like the porridge at first and shook her head “no”, but then she must have realised how hungry she was and decided to eat it all.  After she finished it, she indicated that she was still hungry by rubbing her tummy, so Jason rang down to the kitchen and asked that some weet-bix be sent up.  It arrived about 10 minutes later so I gave her one biscuit, which she demolished in record time and then indicated again that she was still hungry!   Oliver came by and I asked him if he thought she might get sick if I gave her any more but he said he thought she’d be fine and that if she was hungry then I could feed her.  So I gave her the other biscuit, which she promptly ate too!  We then had to put the mask back on, which upset her as she didn’t want it back on, but the doctors had stipulated that she should only have it off for half an hour at a time until they knew she was tolerating it well.  She stayed in the chair for another 20 minutes and we played with some of her toys. 

 At 9:15am she started working a bit hard again, so we took her out of the chair and put her back into bed.  She closed her eyes immediately but didn’t really settle.  Physio arrived a few minutes later, so instead of sleep, she got distressed instead!   Unfortunately that seemed to precipitate a downturn for the rest of the morning!  She started working really hard – you could see her sternum recessing almost to her back! -  and her heart rate rose to over 150 and fluctuated between 148 and 156. Jason suctioned her twice more and removed quite a lot of stuff but it didn’t last for very long.  (Wade popped in for 10 minutes and brought her a WonderPets DVD that he had downloaded from the internet.  This one has the correct Canadian accents, not the UK version that is on the DVDs that we bought from Target, so she seemed to enjoy watching that for a while). Dr Georgie and the ICU Registrar  kept coming in to check on her and Georgie said that she sounded a little more noisy than earlier that morning.  She then requested physio come early (they weren’t scheduled until after 1:30pm) and she arrived about 12:45pm.  Of course, as soon as the physio started patting her, she started crying and got herself very distressed, which of course exacerbated the problem.  She did a couple of suctions and left but Tahlia continued working hard for another 10-15 minutes.  She started to fall asleep but Jason had to put on her budecinide neb which woke her again and got her upset again.  Mum started talking nice and calmly to her and actually got a couple of smiles and a giggle and then she finally started to nod off.  Finally, at 1:30pm she fell asleep!  Her heart rate also started to fall back down slowly and it’s now 3:15pm and her heart rate is 128.  I am now starting to wonder if the budecinide was what she needed as she seemed to settle a lot better once she had it.

 Sandra, the play therapist has just come around but Tahlia was still asleep.  Just as she went to go she woke up, so Sandra has gone to work with Willow and will come back to Tahlia if she’s awake later on.  She did wake up, so about 3:30pm Sandra came over and started playing with Tahlia.  She gave her a “Lamaze” flower garden where the flowers light up and +play music when they are touched.  She quite liked that and was fairly interactive with Sandra.  She then sang “Five Little Ducks” (which she reduced to 3 because when she asked Tahlia if she could sing her a song she shook her head no!).  She had this gorgeous white soft toy duck which had five little yellow ducklings hiding in a pocket under its bottom.  It was very cute.  Tahlia was a bit serious, but she seemed to enjoy it.  She then read her a Christmas book.  It was lovely for her to interact with someone here that didn’t touch or “hurt”  her for a change. 

 After Sandra left we played with Tahlia some more and then Kate brought Willow over for a “play date”.  It was so beautiful.  Both little girls had lots of smiles on their faces.  Tahlia just kept looking at Willow and smiling the most beautiful smile.  Kate is such a lovely lovely girl.  She went downstairs a little later to refill the girl’s balloons with more helium and brought Tahlia back a sweet little pink coin purse to put in her handbag and inside the purse was a little mermaid bracelet and $3 to buy lollies “as every little girl has to be able to buy her own lollies”.  She really is a kind and thoughtful girl.  With all that’s going on in her own life, she has an amazingly strong and determined spirit and I am sure that Willow is also here for a reason and will grow strong and healthy with help of her determined and doting parents.

 Around 4pm Tahlia started rubbing her tummy, indicating that she was hungry.  I asked Jason if she could have anything and he said that the doctors would decide at rounds if she was able to have the mask off due to how unsettled she was this morning.  After lots more tummy rubbing, we finally got an answer around 5pm that it would OK!  We put her in her special chair and took off her mask and I got her some ice cream and custard.  Well, she didn’t want a bar of it!!  I asked her if she was hungry and she said yes but when I went to give her the custard or ice cream, she just shook her head no and started to cry!  I then asked her if she wanted weet-bix – and she nodded her head yes.  Well that started the great weet-bix hunt!!  (Because she wasn’t allowed to have the mask off for long we had to put it back on until she was going to eat, which really upset her).  Di arrived around 5:30pm and that cheered her up for a while as Di played with her and took her mind off her tummy!

 Jason rang down to the kitchen to ask them to send some up.  Mum and Di left around  6pm but the weet-bix still hadn’t arrived.  I went to the main desk a couple of times to check if it had been left there and asked one of the ladies on the desk to let me know if it turned up.  She said she’d follow it up and would let me know.  She was really lovely and tried to get in contact with the kitchen but kept getting their message service.  By about 6:20pm Tahlia was starting to get quite upset.  She’d been hungry for 2 hours or so and all she wanted was her weet-bix!  A couple of other nurses in the room said that it could take forever at this time of day (preparation and cleaning up after dinner) and that I should just go and buy it from the shop downstairs.  So after giving it a few more minutes, I left her in her chair with Jason and raced downstairs to buy some weet-bix and milk.  Of course, by the time I got back to the room the weet-bix had been delivered!!  Typical!  So in the end my beautiful little girl finally got what she wanted – and didn’t she enjoy it.  She had two weet-bix with pureed apple and ate it all.  Scott arrived towards the end, so after she’d finished, we put the mask back and settled her back into her bed, changed her nappy and let her go to sleep.  I left shortly after at around 7:15pm to go downstairs and have some dinner and sleep. 

 Unfortunately she only slept for a couple of minutes after I left but Scott said she’d been Ok and that physio suctioned up quite a lot when they were came around 10pm.  She finally fell asleep around 11:45pm.  It’s now 12:45pm and she is sleeping peacefully, but her heart rate still seems a lot higher than usual – 126.  Normally when she is sleeping she ranges between 96 and 105 depending on how deep asleep she is.  I think she is OK . . . I hope she is OK.

 She is due for another lot of physio at 3am, poor little thing.  I hope they cut out this session soon, it’s too tiring.  I don’t see why they just can’t wait and suction her first thing around 6am.  We just have to grin and bear it I guess.

Today was another topsy turvy day.  She was pretty good first thing, especially considering the lack of sleep.  Peter Cooper popped in and had a chat for 10 minutes about his fundraising evening on Saturday night at Parliament House.  He raised $75,000 which was fantastic.  He is so lovely and is really happy with how Tahlia is going so far.

 After I don’t know how many requests, the lady from Plastics came around to “check” Tahlia’s pressure sore.  Boy was she a bit of a cow!  She marched in here muttering how she’d been asked to review Tahlia and that it wasn’t something she needed to do.  She said she’d seen her a week ago (which I corrected her and said that I hadn’t seen her before for a review and that she’d originally seen Tahlia 3 weeks ago).  She was really quite abrupt and rude and basically said lots of kids get them and there’s nothing they can do other than change the bandage every 2-3 days.   That was never said before – the bandage was on for 3 weeks until Jo followed it up yesterday!  Her whole manner indicated that coming to see Tahlia was a complete waste of her precious time.  Even Lisa commented on how rude she was.  She said if her hair didn’t grow back that they could do a small procedure later to make it grow back.  Apart from that she said it was OK (not that she really looked at it) and said it would eventually heal. 

 Tanya from physio came in around 9:30am, which was good as she was starting to need it by then.  After physio (which of course she hated) I was able to put her in the chair and fed her a weet-bix with pureed pear and warm milk.  She really enjoyed it and kept opening her little mouth faster than I could spoon it in!  After breakfast we played in the chair for a little while and then Desiree the speech therapist came up and assessed whether she was able to tolerate water as yet.   She asked Tahlia if she wanted some water and she said yes.  I had brought in her straw cup from home so we tried that first, but unfortunately she coughed and spluttered and went quite red in the face, so she is not ready for the thin consistency of water as yet.  Desiree showed me a thickening product they use and told me she would send a tin up for me to use in milk or water to thicken it slightly (like runny glue) so she would be able to drink.  She also gave me a special cup to use.  She was off the mask for about 45 minutes and by the time Desiree had finished she was looking pretty tired.  When we went to put the mask back on and put her into bed though she got upset and didn’t want to but as soon as she was settled she went straight to sleep – for about 15 minutes. 

 Mum arrived shortly after and because, at that time, I thought she was asleep, I decided to go and grab a couple of hours sleep myself in my room downstairs as I’d had very little sleep during the night.  When I came back 2 hours later at 2pm, mum told me that she hadn’t slept at all and that at one point she started rubbing her tummy.   Mum asked her if she had a sore tummy and she nodded her head “no”.  Mum then asked if she was hungry and she nodded her head “yes”.  Mum asked her what she wanted and she managed a little croaky “share!”.  Lisa and mum told her that she could have it when I came back and mum said that she really good and patient in waiting.  When I got here we put her back in her special chair and I went to find some “share”.  Unfortunately though there was none!  The freezers were empty!  Lisa rang down to the kitchen to ask for some, but the lady she spoke to didn’t understand English very well so we weren’t sure if she’d actually send any up (Lisa asked her to send up a box of small tubs).  Luckily there was some custard and vanilla yoghurt in the fridge which had been ordered for her for a previous meal, so fortunately she accepted that and enjoyed the custard (she didn’t really like the yoghurt).  Because she seemed so hungry and was doing so well, I asked Lisa if she thought I should let her have some vegetables tonight for dinner.  Lisa agreed it would be fine so she rang the kitchen and asked them to amend Tahlia’s menu for tonight and tomorrow night to include some pureed vegetables. 

 She had the mask off for half an hour but towards the end of the half hour she started coughing a little bit and you could hear the secretions starting to build up.  She then started to get anxious and you could see her start working hard and her oxygen level stats started dropping again.  I was scared that what happened on Saturday morning would happen again, but Lisa managed to suction her quickly and she managed to cough a little herself to clear it.  She then needed another suction half an hour later and about half an hour later she started working harder again.  She wasn’t getting any sleep and you could see she looked exhausted.  Dr Sabode came around and looked at her and requested that her physio be brought forward as it looked as though she needed it.  Tanya from physio came about 10 minutes later, but by that time she’d settled right down and starting to go to sleep.  It was decided to proceed with physio anyway so she was woken up again.  She was pretty upset to start with but then accepted it and Tanya managed to get up quite a lot of “yukkies”.  She also had a very dirty nappy after physio, so once she was cleaned up and changed she finally settled down.    She kept opening her eyes though and looking over to mum and I and then she just started smiling and raising her left arm above her head.  Mum and I then started copying her and she thought that was funny.  She drifted in and out of sleep for about an hour and when Di arrived around 5:30 pm she finally went to sleep and was still sleeping when Scott arrived just before 7pm.

 One of Peter’s team came to visit this afternoon.  I can’t remember her name, but she apparently will be looking after Tahlia in relation to the CPAP once she is out of ICU and on the ward but she is also involved in doing a “sleep study” where they monitor the respiratory function while the child is asleep.  She said they would probably be looking at doing it sometime next week on Tahlia.  It’s just a matter of recording heart rate, respiratory rate etc.  So that will involve another team of doctors coming around to check on her.  There are so many people involved with her care that I can’t keep up with everyone!  Mum also said that a female Neurologist came up and checked Tahlia’s  reflexes again while I wasn’t there and was apparently satisfied with her responses.

 Scott said that she was pretty good tonight and had some ice cream, which she enjoyed.  (One small tub had been delivered with the dinner orders – it had just been left sitting on a tray with her dinner (just pureed carrots and pureed beans! – yuk! – we gave that a miss!)  So I put a name sticker on it and put it in the freezer – they’d better send some more up tomorrow!)  She apparently did the same thing to Scott as she’d done to mum earlier in so far as rubbing her tummy and nodding yes when asked if she was hungry and saying “share” when asked what she wanted.  It’s very cute!  She had some more physio around 10pm and had been asleep for about an hour when I arrived at midnight.  She is due for more physio at 3am again – can’t wait for that one! It’s now 1:30am so hopefully she can get a good sleep in over the next hour and a half. 

 Brad also turned up her BIPAP from12/10 to 14/10 which will give her stronger support. (BIPAP supports her breathing as well as keeping her airway open).   We keep trying to get back to CPAP (which is less support and just blows air in to keep to keep her airway open and doesn’t actually do anything to support her breathing) but it looks like it’s going to be a slow process!   Dr Sabode came and saw me and said that no matter what, she should not be off the mask for more than half an hour at a time as it was too much for her and tired her out too much if she is off it for any longer period.    He then told Lisa so it should be in the Notes.  We’ll see if that makes any difference to her tomorrow.  It is so up and down.  But still, she is definitely a lot better than a few weeks ago!

She fell asleep again around 7:30am and then Anna from physio came up around 9am.  She is starting to get a little bit more distressed when physio comes around, but she is still handling it pretty well and will open her mouth and is getting better at coughing.  Anna is lovely and handles her really well. 

 After physio Jo put her in her special chair (is called a tumbleform chair) and after half an hour we took off her mask and I was able to give her some ice cream, which she really enjoyed!  I tried to get her to say “share” again, and she really tried, but all that came out was a very shaky squeak, but you could see her mouthing the word.  She was pretty tired after that so we put the mask back on (she had it off for about half an hour) which she wasn’t particularly happy about and then put her back into bed.  She fell asleep pretty much straight away and slept for about an hour or so. 

She woke up in time for her next round of physio with Anna and then we put her in the tumbleform chair again.  Shortly after, mum and Di arrived.  Well the huge smile that lit up her face when she saw them, it was just beautiful!  She then had some more ice cream and a bowl of custard!  She was able to say “share” a bit more clearly and tried really hard to say “more”.  While she was eating and thus distracted, Jo removed the dressing on the pressure sore on the back of her head.  She had to cut away some more of her hair, but luckily not too much.  The doctors had a look at it and thought it looked better and Jo, too, thought it looked better.  It’s been 3 weeks though and I’m pretty annoyed that it’s taken this long for anyone to check it.  I have been asking to have Plastics come and look at it for days!  Jo was terrific though and really pushed for it to be checked today.  Unfortunately “Plastics” aren’t available on Sundays, so she ended up having to remove the bandage, but she was really gentle and did a really good job.  I thought it looked pretty awful, sort of like a deep graze across the back of her head, like when you fall off a bike and graze your knee.  I still don’t know if her hair will grow back.  Jo took a swab off it to make sure it’s not infected so we should find out the results in a few days, but as I mentioned before, the doctors think it look alright, so hopefully they are correct!

 We played some games with her with some of toys and you can see she’s really trying to move and hold her toys in the right way, but her brain just can’t quite connect with what she wants to do.  It really does break my heart to see her unable to even pick up her small Dora character and put it in it’s box.  She really tries, but her hands and arms just don’t have the coordination or the strength to be able to do it.  I know it’s just a matter of time, but it’s still hard to reconcile that the same little girl was running around and talking away less than a month ago and now she can barely move her own head.

 After half an hour off the mask and an hour in the chair, we put her back into bed.  She seemed pretty exhausted and even though she cried when we took her out of the chair, she fell asleep almost immediately.  Mum and Di then left, but Tahlia woke up pretty much as soon as they left. I put on a Diego DVD and she watched that for while, then she started to get grizzly, so I tried reading her some books.  The speech therapist had advised that in order to get her to talk again we should talk in short sentences and also read in short sentences, so I asked Scott to bring in her “That’s not my  . . .  (mermaid, dolly, puppy, fairy, monster)” touch and feel books as they are pretty short and have the lovely parts to touch on each page”.  I ended up reading her all the  books, but she pretty much grizzled through all of them.  I think she may have had a sore tummy, especially after eating all that ice cream and custard!  She also indicated that she had a sore head, so Olivia gave her some panadol. 

 I left to have some dinner shortly after that and went downstairs to get a drink from Starbucks.  The whole entrance area has been decorated with hearts in support of heart kids and there is a lovely Christmas Tree in the middle.  It looks really festive – I can’t believe it’s almost Christmas!  When I came back up at midnight, Scott said she’d been pretty unsettled, especially after her 10pm physio.  He said though that he’d had a couple of smiles and at one point he had put on her “Backyardigans” DVD and sat in the chair and then heard her giggling.  He went over to the bed and put his head on her pillow and she started stroking his face.  I think he thought that was wonderful.  She slept until around 1am but has been grizzling on and off for the last half hour.  Hopefully she gets a little more sleep in before the next round of physio at 3am!  

 Unfortunately she didn’t sleep until about half an hour before Gail , the physio came.  It felt so awful to wake her up and of course she was pretty upset.  She was exhausted after the physio but still couldn’t settle properly. Sally thought she may have been having trouble tolerating the NG feed as it was going through to quickly so she turned it off and she settled within 15 minutes!    She finally fell asleep close to 4am, so I also didn’t get any sleep until then and found it a bit hard to wake up this morning when Tahlia woke again around 6am!

Tahlia woke around 3am and was unsettled for about 20 mins or so and then went back to sleep until around 7:30am.

 After she woke up she was pretty good but started working a little bit hard.  The physio came around 8:30am and although she wasn’t particularly happy about having it, she was OK.  Towards the end of the physio I was watching her face and she started dribbling a bit more and white foam started to coat her lips and where she had dribbled on her cheek. Suddenly she started working really and couldn’t catch her breath.  She started to get quite frightened and started losing colour.  The physio and Natalie turned her on her back and started to try and suction her but she was in a lot of distress and her oxygen levels dropped to around 30% and heart rate went through the roof ( I can’t remember how high but it was definitely above 190 at one point).  The other nurse in the room came rushing over and they pulled her CPAP mask off and put the oxygen mask on her and started bagging the oxygen into her.  Natalie pressed the emergency button and about half a dozen people came running to help.  After a few minutes they got her back under control, but she was shaking and scared and her body had gone a horrible mottled colour.  I felt absolutely sick in the stomach – she just looked so scared when she couldn’t catch her breath.  I know we have to expect the ups and downs but when you see your child fighting for her life it’s incredibly scary and you feel so absolutely helpless.  She has gone and is going through so much.  It’s getting harder to see her struggle so much day in, day out – but I know we have to stay strong for her.  She’s the one going through this, not me and if she can stay strong, then so can I! 

 Dad came in to see her just as they got her settled again and while he was here she rested thankfully.  After he left around 10:30, she had another suction and seemed OK for a little while.  We put her in her special chair, but she became quite unsettled after about 10 mins, so we put her back to bed.  She has had another 3 suctions since then (it’s now 11:45am) and is still working quite hard.  She seems to be producing quite a lot of secretions today.  She’s had a few minutes sleep, but doesn’t seem to settle for long.  They are sending a specimen of mucus to pathology to make sure there is no infection as Alan thought he saw some evidence of infection when he did the broncoscopy earlier in the week.  He has ordered some antibiotic nebs to help – not sure why he didn’t do that earlier.  Anyway, we will see what happens.  She has just woken again and is crying so I will go.

It’s now 2:50pm and she has finally been properly asleep for about 20 minutes.   She has really worked hard for the last 3 hours and Dr Egan has put her back on BIPAP.  She had physio around 1:30pm and started to struggle again after the first couple of minutes, but Natalie and the physio were prepared this time and immediately started suctioning and put the oxygen mask near her face which helped to.  They didn’t have to bag her this time thank goodness and once they suctioned up some of the secretions she settled down a bit and let them continue suctioning and patting for another 10 minutes or so without too much protest.  Alan called and didn’t seem too perturbed and just said that every day she’d get better.  He told Natalie to stop the hypertonic nebs and just concentrate on using the saline nebs with each physio session. 

After the physio she settled down reasonably quickly and her heart rate dropped back into the 120s rather than the mid 130s, where it has sat for most of the day.  As I said, then they turned the machine over to BIPAP and since then she has been resting really comfortably and her heart rate is now 114.  I was worried again that they would have to take her back into theatre, but it’s looking pretty doubtful that they will need to do that thank goodness as she is no longer struggling and working so hard.  A physio will now be booked for overnight so that hopefully we don’t experience the “morning crash” again!

 When she woke up Chris, the physio arrived.  Tahlia did really well this time and it seemed to help when Natalie did the suction at the same time that Chris was doing the little “shakes” that help to loosen up the secretions.  It certainly doesn’t look very nice and Tahlia really doesn’t like it, but at the end when you ask her "does that feel better “ she always nods her head “yes”.  Natalie and I then gave her a sponge bath and washed her hair.  She must have felt better after that because she has been so sweaty and her hair really didn’t smell very nice.  Towards the end of the “bath”, Scott arrived so he helped Natalie strip and remake the bed while I held Tahlia in the chair.  She grizzled a bit at first, but then settled down.  It really felt wonderful to hold her.  Her breathing has settled down again thank goodness.  I really do think that because she is still so weak that any advances she makes with getting more energy, she loses the next day because she probably overdoes it. 

Like yesterday she was sitting up and eating and then today she goes backwards a step because she has no reserves left.  I’m glad they have put her back on BIPAP as it really seems to give her more support.  I held her for about 20 minutes and then she started to work a little bit harder so Natalie gave her another suction and then she settled down and started drifting off to sleep.  I then came downstairs to have some dinner that Scott brought in for me and have some sleep.  She is due to have another round of physio around 10pm and again around 3am.  Hopefully it’s not too much, but even more importantly, hopefully it helps Tahlia crashing first thing in the morning after she wakes up and disturbs all the secretions that have been building up over night.

 I forgot to press the “alarm” button on my phone, so I slept in and didn’t get up to the room until 1:30am.  Poor Scott, he was certainly ready to go home by that time!  He said that she’d been a bit restless but did well with the Chris, the physio.  At 3am Chris came back and we had to wake Tahlia.  I felt so sorry for her, she was in such a deep sleep (heart rate was down to 94!), but she had to have it. Chris was lovely and although Tahlia was a bit distressed whilst she was “patting” her, she settled relatively quickly afterwards and was asleep again just after 3:30am.  She then slept through to 6am when one of the nurses tapped me on the shoulder to wake me, saying that she was calling for me (well just making whimpering noises).

Today was another pretty good day.  She pretty much slept through the night and even when the little 3 month old boy in the bed opposite needed help around 5am (he had heart surgery and was having difficulties and needed another operation later in the day) and all the doctors came in and turned on a lot of the bright lights and made noise working on him, she didn’t wake up until 7.00am. 

 Around 7:45am we sat her up in bed and took off her mask.  After 20 minutes she started working pretty hard so Natalie put the mask back on her and gave her a suction.  About 10 minutes later she started working hard again and the ENT team happened to come around at the time at got a bit concerned and decided that they’d have to do another LBO today.  I told them she hadn’t had any physio yet, so they put off organising the surgery until after physio to see how she went.  Sam from physio came up shortly after they’d left and after that she settled really well and went back to sleep until around 11:30am.

 When she woke up she seemed pretty good, so Natalie organised for Desiree to come up and we put her in her special chair and took off the mask.  Mum and Di arrived then bearing gifts (Di brought her a little squeezy Santa head that when you squeezed it it poked out its tongue (sort of like a party blower) and mum brought her one of those educational toys where you push wooden beads up and down and around a wire frame (I can’t think of what they’re called) but they are excellent for developing motor skills coordination and recognising colours).  She really enjoyed ripping and opening the paper and touching the gifts.  She is still finding it really hard to get her hands to do what she wants immediately (it almost reminds me of cerebal palsy), but she keeps trying, just touching and moving her fingers up and down the object and passing it from hand to hand.

 We then gave her some custard, which she loved, and which she tried to feed herself!  She did really well, a bit shaky, but still managed to get the spoon in her mouth and licked her lips and fingers and tried stirring it in the bowl when asked.  She got lots of it all over herself, but she really enjoyed herself.  She also did lots of smiling for the camera when DI asked her to and she also rolled her eyes on cue when asked to do “cheeky eyes”, which when she’s asked to do that at home, she rolls her eyes and looks really funny.  So neurologically I think she’s just fine, it’s just getting her body to work again.

 After an hour she got tired and started to work a little bit harder, so we cleaned her up and got her settled again and Sam came back to give her some more physio around 2pm as she was really starting to need it by then.  That helped and she coughed quite well.  I thought she’d go to sleep then, but she started getting a bit unsettled again. My friend, Janine (a nurse in the liver transplant area) had asked me to meet her for a coffee, but I didn’t want to leave Tahlia if she wasn’t asleep.  In the end I decided to go out for half an hour even though she was still a little bit grizzly.  Mum and Di were still here and I told them that if she started to get distressed to call me and I’d come straight back up.   I met Janine in the Bear Cafe for half an hour and it was lovely to just sit and chat.  When I came back Tahlia was still awake but mum said she’d been fine, just grizzly.  As soon as I came into the room and started patting her head she went straight off to sleep and slept for about an hour until about 5.30pm. 

Mum and Di left just after she woke up so I tidied up all her books and bits and pieces and then sat on the end of her bed and played with her using the bubbles and some of the new toys.  (Play therapy had also been up and brought up a lovely book, Winnie the Poo who blows bubbles (but his mechanics sounded really loud when you turned him on and Tahlia didn’t really like him) and also a little stretchy squashy octopus that had hard coloured beads on the bottom of each of his legs and you can squeeze and stretch him like plasticine).  She really liked the octopus and enjoyed squeezing him with her hands and feeling and stretching his legs.  It even made her giggle when I first gave it to her.  I passed it to her and turned to speak to mum and Di and we heard this little sound.  I turned back and she was having a little giggle to herself as she stretched his legs!  It was a magical moment!)

 Dr Winlaw popped in to see how she was doing and is happy with her progress although saddened by her loss of mobility.  I thanked him for everything he’d done and he said not to thank him until she was able to walk out of the hospital the same little girl who walked in.  He is such a lovely man and you can see he genuinely cares for his patients.  It’s no wonder he is one of the top cardiac surgeons! (I don’t whether I mentioned before but he’s been on a couple of the medical shows on television – “last chance surgery” and another one – where he has performed particularly difficult surgeries on babies who have come through it all beautifully). 

 Scott arrived as we were playing so we then put her back in her special chair and took the mask off again.  We gave her some ice cream and Desiree had also ordered her some custard, so she enjoyed some of each.  The best part of the whole day was when I asked her which one she wanted – custard or share (we call ice cream share at home because she likes to sit beside me on the lounge and we share a bowl of ice cream) – and in a tiny little scratchy croaky voice she said share twice!!  It was so incredible to hear her finally speak and know that she can!  I couldn’t help but have a little cry and Scott was pretty close too!  It was a wonderful moment for all of us.

 After about an hour in the chair she started getting tired and dirtied her nappy, so we sorted her out and put her back into bed.  I went back to my room and had some dinner (Scott brought me in a KFC wrap) and then came back up just after 1am.  Scott said she’d been a bit unsettled and had had another dirty nappy and had finally gone off to sleep 10 minutes before I arrived.  Thankfully she is still sleeping peacefully now (2:30am), so I am now going to try to get a couple of hours sleep.  It has apparently been in the low to mid 40s today, so I am actually quite happy to be in here where it’s nice and cool.  Hopefully poor old Moet and Honey haven’t been too hot stuck in the house today and hopefully Scott will be able to sleep tonight.   Until tomorrow . . . .

Well, she didn’t sleep much after 2am when she woke up because of a very dirty nappy.  She still has very runny poo so they have taken another sample to make sure everything is all right.  She remained unsettled for pretty much the rest of the night until around 7am, when she finally fell asleep exhausted.  Inge kept trying to wake her up so that she wouldn’t sleep all day and be awake all night, and I told her to let her sleep for a couple of hours, that she would have plenty of time during the day to play and tire herself out.  Luckily one of my favourite nurses was on to today, Sharon, and she said that she’d let her sleep until 10am if she wanted to.  She was fabulous with her today and did a lot of running around to finally get all the therapists to come in. 

We played with bubbles and Tahlia actually tried to blow a bubble through the bubble wand.  It was wonderful to see her trying.  Then we got her out of bed and had her sitting on my lap, semi upright, without the mask for 20 minutes and she did really well.  She wasn’t overly happy about sitting with me, and Sharon said that it could be that she felt more secure in bed, but by the end of the time I think she felt more secure.  She had some physio around 11am and did really well and then fell asleep around 12:30pm so I went down to my room and caught a couple of hours sleep myself.  I must admit I did need it today as I got very little sleep last night, so mum stayed with her.

When I came back, the Occupational Therapist, Lisa, was here and said that she would try to get a special chair for Tahlia to sit in so that it would strengthen her neck and back and get her out of the bed.  Desiree , the Speech Therapist, also came up and assessed her and agreed that she could have some ice cream.  Sharon took off the mask and we set her up in the chair and asked if she was comfortable.  She shook her head to indicate “yes” and she looked really comfortable.   Mum started playing peek-a-boo behind my back and we started being a bit silly and she kept smiling and even had a big giggle.  It was wonderful!  The words silly and funny seem to make her smile.  Desiree then got her a small tub of ice cream and she ate about ½ the tub and enjoyed every mouthful.  Every time I asked her if she wanted some more she would nod her little head and when I asked her to lick her lips where there was ice cream and she did.  She is still so terribly weak and frail, but I could really see our little girl coming back! 

Stephanie, the physiotherapist then came to do some physio but Sharon hadn’t gotten around to giving her the hypertonic and they agreed that because she had just spent so much time in the chair that she wouldn’t need physio until a bit later in the evening.  Steph then did an assessment of Tahlia’s movement in her legs and arms so that a plan can be devised to start helping her get back the use of her limbs. 

 She managed quite comfortably without the mask for 1 ½ hours and perhaps could have gone a little longer, but we decided it was time to put it back on as she was looking tired and ready for a sleep.  Then Di arrived to pick up mum and she gave her a present to unwrap.  She tried so hard to tear off the wrapping.  Her hands are still fairly uncoordinated, but she eventually managed to tear up a fair bit of the paper.  It was good that Steph was still here because she tried to get Tahlia to do some reaching with her hands and move her arms a bit more and she wouldn’t do it.  But when she tried unwrapping the present she moved her arms a little bit more and Steph was able to watch her do it.  (The present was a funny yellow smiley face on a pink stick that when you shake it from side to side makes a funny noise).

 She then dozed for a little while and mum and Di left.   She then woke and watched a Dora DVD and then Scott arrived bearing gifts!  He bought a fairy princess Christmas doll which when you press it’s hand plays a Christmas song.  It’s very cute.  He also bought one for little Willow in the next bed and a little toy dog for the baby in the other bed in the ward who is alone for most of the day.  She is only 8 months old but is the size of a 3 month old – she’s so tiny!  I don’t know if she has a mum as her Aunt is the contact person and she only stays with her for an hour or two during the day.  We both feel so sad for her being all by herself in here.  The nurses though fuss over her all the time, so that’s nice.

I went downstairs to have some dinner and came back up at midnight and Scott said that she’d just gotten to sleep.  She had physio and did well with that and now looks settled.  Hopefully she will sleep better tonight than last night, especially after everything she did today.   Today would have to be the best day we’ve had yet!

 (I’m not sure if I mentioned it before, but she is still having a reaction to bath soap and is still going bright red when it is used on her skin.  The redness disappears after a few minutes though, so I don’t know if it is hurting her or not.  Her skin has also been dreadfully dry, especially when she was intubated, it was really scaly and felt really rough.  Thankfully she doesn’t seem to be bothered by moisturiser, so I am using a lot of QV moisturising cream all over her which seems to help.)

After the nurse woke her up do a suction (She got a fair bit of “yukkies” up) and then she had some physio at 10am and did really well. Mum arrived and got a few smiles and then after the physio she went straight to sleep.  Scott & I had a bit of an argument on the phone as he is upset that I’m not going downstairs for a sleep during the day when mum is here.  I kept trying to tell him that I know when I am tired and need sleep and I will certainly not compromise Tahlia by staying with her if I am over tired.   I need mum to be here to help me play with Tahlia and keep her calm as that can get exhausting and also just to de-stress with as I don’t have much opportunity to talk to Scott about how I am feeling and because he has a lot on his plate (work, looking after Honey & Moet, looking after the house and running backwards and forwards to the hospital).  I know my limits and I know that Tahlia needs me and I can only do my best.

 I spoke to Sue Trapani about how she thought I was doing and she said she thought I looked really good and that she would say something to me if she thought I wasn’t getting enough rest.  She agreed that there are some days that are more stressful than others and that it is perfectly natural to be a little emotional or look a bit stressed out in those situations!

Tahlia basically slept most of the day until around 5:30pm after her physio, when she wouldn’t  settle any more,  She kept whimpering and was just generally unsettled.  I tried reading to her and putting on DVDs, but that didn’t help.

Scott arrived just after 7pm, so I left shortly after and went downstairs to have some dinner.  When I came back up at 12:30am he said that she’d been unsettled until just shortly before I arrived.  The nurse said that she’d been crying and wouldn’t settle.  Apparently the doctors think she is getting bored so they are going to get play therapy to see her tomorrow and they are also saying that she may be bordering on depression!  Great, something you really want to hear about your 2 year old.  I think she was unsettled because she’d already slept most of the day and perhaps was bored but didn’t know how to help herself.  She hasn’t had a dirty nappy today but has had lots of wind, so I think her tummy is sore.  She gets to the stage where she just says “no” to everything, so when the nurse asked if she had a sore tummy, she said no.  Anyway, she apparently finally fell asleep just before I got here.

 . . . I wonder what’s going to happen today!

It was finally quiet in here around 2:30am, but luckily Tahlia slept through it all.  She woke for a minute or two a couple of times when they were giving her medication, but I just stroked her head and she went straight back to sleep.

 When the first morning rounds came around about 7:30am they advised that they thought Tahlia should have another LBO to check that everything was OK.  Just as they were about to leave, the ENT group turned up and agreed to schedule an LBO for some time today.  It was eventually set for 1:30 and we got into surgery about 2pm.  Mum was here so we went to have lunch while she was in theatre.  Di had prepared some chicken and salad to put on Turkish bread and mum and I decided to have it outside, near the children’s playground.  When we got there, we realised that the chicken required heating so we decided to go up to the parents hostel and eat outside there.  Unfortunately when we got there, mum realised she’d left the Turkish rolls back up in ICU!  In the end, it was all too much so we had lunch at the Bear Cafe instead. 

About 3pm we got the call that Tahlia was back.  Her trachea apparently looks good, but there are a lot of thick secretions in there that need to come out.  The plan is to give her hypertonic saline nebs (very concentrated high salt content saline) every 2 hours which will help to thin out the secretions and make them easier to be suctioned or coughed out.  I am a bit concerned that all the suctioning and waking her every couple of hours is going to tire her out even further, but she has to have it done this way for at least the next day or so or it could cause a lot of problems in so far as the secretions could block her airways.  It’s not going to be a nice couple of days.  I hope she will be OK and doesn’t get too scared and worn out.  She is still being pretty good though in so far as opening her mouth for the suction.  She really is amazing.  She has had just over one hour’s sleep so far (about 5:45 to 7pm), so I am really pleased.  The more sleep she gets the stronger she will get.

Aunty Carolyn visited today and brought Tahlia a little bear dressed in theatre scrubs.  It’s very cute.  She also very kindly gave $50 to mum to give to me to put towards food in the hospital.  That is so kind of her.  I feel a bit embarrassed taking it but mum assured me that that’s what she wanted to do.

 We have also had the strangest and funniest nurse today.  He is the driest, darkest person I have ever met.  He mainly talks doom and gloom and actually never shuts up, but he’s actually quite funny with it with a very dry sense of humour.   He  convinced the “powers that be” that 2 hourly nebs were too much, so they have been reduced to 4 hourly, which I think is much more manageable! 

 Scott got here just before 7pm and I went downstairs for dinner around 7:30pm and then came back up at midnight.  Scott told me that Dr Gillies told him that I looked a little stressed today and that everything was going well with Tahlia and that I shouldn’t worry.  I told Scott that I wasn’t particularly worried, I was just concerned that when they said she was going to have to have 2 hourly nebs that she wouldn’t get any sleep at all for the next few days and as she was already so weak and tired that it would make it worse.  I wish that the staff wouldn’t discuss me behind my back with Scott.  It just makes him more anxious and that in turn makes me more stressed!!

 Thankfully she slept well all night, so is definitely catching up on her sleep.  She only woke briefly when she had to have the nebs and didn’t wake up properly until 6:30am when Inge woke her to do a suction. 

Another stressful day as she was upset and unsettled nearly all day again.  The physio came around 4am and, of course, had to wake her again.  She has been woken out of a deep sleep nearly every hour because when they change the nebs or give her meds she wakes up, even if it’s only briefly.  As long as I stroke her head and hold her hand, she goes back to sleep relatively quickly but it’s still broken sleep.  Anyway, she did well with her physio and slept afterwards for about an hour and a half.  It was good for me too!

After that she was good for a little while but kept making a little crying sound and I couldn’t work out if she was sore or uncomfortable.  She had some more physio and they got a lot of “yukkies” up and she’s even started to open her mouth and let them put the suction tube in – she must know now that it’s helping her – she’s just so brave!  She still didn’t really settle properly so Steph gave her some panadol, but it didn’t really do anything.  Di arrived around 11 and then mum at 12:30pm.  At midday they removed the CPAP mask and just tried her with nasal prongs and oxygen.  She lasted about 10 minutes and was working pretty hard after about 5 or 6 minutes.  One of the ICU doctors happened to pop in and saw her and said that she needed to be put back on the CPAP as she was working too hard.  Peter popped in just after this and was really happy with her progress.  Other ICU doctors saw her during the morning and every time they saw her she looked fine!  But as soon as they’d gone, she’d start working hard again.  I asked Peter about giving her some more ice cream and he thought it would be alright but Stephanie said that Dr Cheng had requested Speech Therapy come and assess her before giving her any food orally, as they need to ensure she can swallow properly otherwise she could choke.  A request was put in, but as yet nothing has happened.  I will chase them up tomorrow.  Everything takes time around here!  I also asked about physio on her arms and legs and was told that she needed a referral from the doctors in ICU before that could happen.  It’s crazy – this was requested 3 days ago and now someone decides that she needs a formal referral!  I spoke to the physio when she came around and she said that basically at the moment they should concentrate more on physio for her breathing rather than movement as she would tire too much.  That makes sense.  She is starting to move slowly on her own, it’s just going to take time.  She is definitely moving her right arm more which is good to see.  I just wish she’d start moving her head on her own.

 She had the dressing removed from her chest scar and it looks really good.  David did a great job of ensuring the scar is as fine as possible.  The drainage scars under the chest scar are also healing well, except for one which still looks a bit open and a bit infected.  A swab was sent yesterday to make sure it wasn’t infected and the results haven’t shown anything, so I guess it too will just take time to heal.

 After working hard again for a while and continually crying I told Stephanie I was concerned she was working too hard so she got one of the ICU doctors to come and have a look at her.   The doctor came around and evaluated her and recommended moving her position and more physio and if that didn’t work then they’d look at increasing her pressure.  After more physio - again she was so good and opened her mouth and they got up a lot of “yukkies” - we resettled her and she finally started to go to sleep, but you could see her chest and throat were working far too hard.  At the afternoon rounds Dr Elena and others came around and decided to put her back on BIPAP as she really was doing it hard.  I know they have to try her weaning her so that she will eventually be able to breathe on her own, but both Scott and I think they have been rushing her a bit and need to take it a bit slower!   I think Peter will be a bit disappointed tomorrow when he finds out she’s had to be put back onto CPAP.  He was so thrilled that she was managing on CPAP alone.  Oh well.  2 steps forward, 1 step back!

Changing to BIPAP helped for a little while but then again she started working too hard again.  She was really struggling and kept trying to get air through her mouth.  You could see she was getting so tired.  I was really scared that they were going to have to re-intubate.  Anyway, Oliver, the Clinical Nurse Consultant, came and had another look at her and wondered whether the CPAP mask might not be on properly, and sure enough, the mask was sitting right up under her nose and was stopping her breathing!  The poor little girl, she must have felt like she was smothering!  Once he repositioned the mask the effect was almost instant!  She settled and immediately went to sleep.  Poor mum, the stress of the afternoon caught up and she was pretty upset and Di also got a bit upset.  It’s pretty emotional watching her struggle and not being able to help or do anything. 

 Scott arrived just before 7pm and I went downstairs to have some dinner that Di had brought in.  She had woken up just as l left and was a little teary.  I hate leaving her when she’s like that but I had to get some sleep.  I must admit I’m feeling both emotionally and physically exhausted tonight.  When I got back at midnight, Scott said that she hadn’t had much sleep as it was pretty noisy in here – they got a new admission.  She’d had some physio around 11pm and did well and had just settled down to sleep when I arrived.  It’s now nearly 1am and she’s really settled and sleeping well.  Willow isn’t settling tonight and keeps waking up, hopefully she won’t wake up Tahlia . . . Oh no, Willow has just pulled out her NG (feeding tube) and is now crying, poor little thing.  I hope they can settle her soon, I know it’s not her fault, but Tahlia desperately needs to catch up on her sleep! 

Tahlia slept until just before 7am and I managed to get a few good hours in too, which was good.  The previous nurse, Inge, left early and didn’t write her notes up properly.  She apparently left everything in quite a mess according to Sally, the nurse who relieved her.  When Anj came on she couldn’t find if she’d given her the bubecinide and I didn’t know if she had or not.  I knew she’d had one neb, but I wasn’t sure if it was saline or the steroid.  Anj tried ringing her a couple of times, but it wasn’t until over an hour later that she finally rang back.  It’s really not good enough!  What if it was a critical medication that  had been missed!

 The physio, Anna, came around to do physio just after 8am, which by that time she was really ready for it.  Anna is lovely and is very gentle with her approach to Tahlia, so that helps.   She suctioned a lot of stuff (“yukkies”) off her chest and she settled down for about half an hour before getting upset again.  I thought she needed another suction and asked Anj to do one, which she did, and again managed to bring up lots of “yukkies”. 

 Alan rang to see how she was and I told him that she’d had a good night but was a little unsettled this morning.  He asked if she’d gotten out of bed yet and I said that I’d been able to hold her twice, but that I couldn’t believe how floppy she was.  He asked me what I meant by floppy and I told him she was just like a newborn baby.  She can’t support her head and her arms and legs are quite floppy.  He seemed quite surprised by this and asked if she was having physio on her arms and legs.  I told him not yet and he said that she should be.  So they should start doing more physio with her next week.  Hopefully that will help her as it’s quite disconcerting seeing her unable to move properly.  To go from a healthy vibrant energetic little girl less than 3 weeks ago to what she is today is quite unbelievable.

Unfortunately though from that point on, she couldn’t settle and was quite upset and distressed for the rest of the morning.  Anj gave her some panadol, but that didn’t do anything much.  Anj was saying that we might be able to take Tahlia out in a pram around the ward and out into the waiting room!  I told her I thought it was a bit soon and wasn’t it dangerous to expose her to bugs and germs at this time.  I don’t think she appreciated me saying that and was a little bit short.  She asked if I thought they were moving too quickly and I said yes.  I said that maybe the pressure on the CPAP machine was too low, but she said that if you start turning things back up then you are going backwards.  I don’t agree -  surely “slow and steady wins the race”.  There is no need to rush this, we’ve got time and she is still too weak to move too quickly.

 Anna came back around 11am to give some physio to one of the other patients (we are in a 4 four bed room and only one bed isn’t being used at the moment) and after she’d finished I asked her to check on Tahlia as I really thought she was working too hard. Anj, as usual, was nowhere to be found (she’s hardly here – I don’t know what she does!  Di was here and I asked her if I was imagining that Anj was never here, but she agreed with me!) Anna agreed she wasn’t going very well.  I mentioned what Anj said about turning up the pressure and she agreed with me that it may have been too soon when then they reduced it.  She went and spoke to Dr Egan about it and he came in and checked her and agreed she was working too hard and increased the pressure support from 6 to 10.  Apparently it had been charted as 8 on the computer but it had been turned down to 6 for some reason.  There are certainly lots of errors happening here!  He also organised for another x-ray.

 Once the pressure was turned up, she stopped working so hard and you could see she felt better.  She slept for half an hour but was woken by noise.  Anna came back shortly after she woke and did some more physio and again brought up a lot of “yukkies”.  It’s so awful watching her struggle with the suctions.  She looks and sounds as if she’s gagging, you just want it to stop, but it has to be done otherwise it would be too dangerous.  Poor little thing, she’s going through so much and I feel so helpless some times that I can’t do anything to help her.

She was still unsettled throughout the afternoon and kept making little crying noises.  Dr Egan came around a couple of times to check on her and said that the x-ray came back looking good.  She is just so tired but every time she tries to close her eyes the noise in the rooms wakes her up.  I think I was nearly as exhausted as she was by the time Scott arrived at 4:30pm.

 I went to sleep about 5:30pm and slept until 10:15pm.  After hitting the “snooze” button a couple of times, I came back up to ICU just before 11pm.  Scott said she’d just gotten to sleep and had been pretty unsettled up until that time.  He also said that he was eating an apple earlier and she kept looking at him.  He asked her if she was hungry and she nodded yes.  He asked Anj if she could have some ice cream and she said yes and apparently she ate 2/3 of a small tub.  I bet that tasted fantastic!  It has probably also helped her to settle and sleep.  She’s probably been hungry! 

It’s now midnight and she’s woken twice while she’s been given the nebs.  Even though they are being given through her existing ventilation tube, she still wakes when they unscrew the little jar that is attached to the tube.  Luckily though she has gotten back to sleep very quickly as I just hold her hand and stroke her head.  Hopefully she will sleep through until 3am when she has to have her next lot of physio.  It will be interesting to see how she is in the morning after having the overnight physio.  It’s looking as though she really needs it quite regularly otherwise she starts having difficulties and working too hard.

Well, that’s my entry for the day.  Hopefully tomorrow is a better day 

Today was a pretty good day.  The physio came and saw Tahlia just after 3am and although she didn’t like the suction, she fell asleep pretty quickly afterwards and slept through until 6am, so I also got a couple of good hours sleep.

 Anj was back again today and I was a little worried about how she was going to be today, but she’s been really nice again, which is a relief.  Mum and dad arrived around 10am and stayed for a little while before heading back home for the weekend.  Mum is coming back on the bus on Monday.  Tahlia was really happy to see them and gave them a few smiles.  She is still incredibly weak, but she’s breathing really well on the CPAP and is coping really well with the physio.  She had some more physio around 8am and again at lunch time and each time, although she wasn’t happy with the suctioning (and is getting more adept at keeping her lips closed and clenching her teeth!), she managed to do some good coughs and settled quite quickly afterwards.  The doctors are all really pleased with how she is going today.

 Di arrived around 11am and left around 3pm.  As usual she brought me a yummy dinner, including dessert of home made custard – yumm!  After she went Anj said we could give her a sponge bath and wash her hair. She’s been so hot and sweaty on her head that I’m sure it must feel awful and it will feel so much nicer once it’s clean again.  She is still having a reaction to all bath products (her skin turns bright red) so we are just bathing her in plain water, however she doesn’t seem to have the same reaction to shampoo, so that’s good.  After her bath, Anj plaited her hair in two plaits.  She looks so cute.  During this time she removed her face mask and coped really well.  It was so lovely to see her beautiful face!  After that was all done, I was able to hold her again in my arms in a chair by the bed which is such a wonderful feeling.  Looking down at her beautiful face and just staring into her eyes and then watching her doze off, gives such an amazing feeling of contentment.  I was still holding her when Scott arrived and he was quite amazed at how well she’s doing.

I went downstairs and had dinner in the courtyard area outside the rooms.  It was apparently really hot outside today (you’d never know in here as the air conditioning is quite cool), but it had cooled down this evening and it was really lovely to just sit in the fresh air for a while.  Scott said he mowed the backyard this morning and when he came inside he noticed the boy from next door out the front of our house and when he went outside to look he found the boys from either side of our house mowing and do the edges on our front lawn to help us out.  I thought that was so nice.   That was such a lovely thing to do and I know it was a really big help to Scott.  He said he’s rearranged the family room and cleaned the kitchen, so he’s been a busy boy!  I think he should be resting, not tidying up the house, but that’s what he wants to do! 

 It’s now 2:15am and Tahlia has just settled back down and is asleep after waking a few minutes ago when they attached the saline neb.  Hopefully she will sleep well for the next few hours.  Unfortunately Willow, the little baby in the next bed, is restless tonight and has been crying a little bit.  Poor little thing.  I really admire her parents.  They are from Coffs Harbour and they have been living in the hospital for over 5 months as Willow was born with only half a heart.  She’s now just over 7 months old and is so tiny.  She’s had 3 operations and still needs another 2.  She is having a pace maker put in after Christmas, so I am so hoping that it all works OK for them.  Kate, the mum, is really strong and positive.  You see and hear so many tragic stories in this place, but you also find a lot of inspirational people here too.

What a topsy turvy day we had today!  Overnight she slept pretty well, however when she woke about 5:45am she started to struggle and working really hard to breathe.   Jason went and got the doctor and they administered adrenalin and bubencinide  (not sure of spelling – it’s the steroid – it’s also called Pulmacourt) and did a big suction, which of course distressed her even more.  I felt so helpless that I couldn’t help her, she just looked so scared and it sounded like she was drowning.  It was really awful.    Unfortunately we went through the whole scenario again about an hour later, just after the ICU doctors rounds. 

Anj was now the nurse on duty and when she moved Tahlia  to sit her up it made everything worse again.  She was in a really strange mood and instead of making a stressful situation easier actually made it a hundred times worse.  It was almost as if she were completely disinterested in looking after Tahlia today.  She was great the last time she looked after Tahlia, so I don’t know what happened today!  Dr Cheng and team came around and were concerned that she was working so hard.  He advised that she’d need 2 hourly nebulised saline through her CPAP machine and 4-6 hourly nebulised steroids together with physiotherapy to get her to cough up the secretions on her chest.  He advised that if she didn’t improve they may have to intubate again.  He asked Anj if they had started her on the budescinide and she said no, but I knew that she had already had it twice – once with Jen and once with Jason early this morning, so I told the doctors yes.  Well Anj just looked at me and said that’s not what they were talking about and I said do you mean the steroid, she has had that, and Anj said no she hadn’t and rolled her eyes to me and then again to the doctors to indicate I didn’t know what I was talking about.  I was starting to doubt myself, but I knew she’d had it.  She checked in the notes and it hadn’t been written there, but they finally checked on the computer and both doses had been written up.  No apology.  She made me look as if I was just a stupid mother who didn’t really have a clue. I wasn’t impressed!  Next she got the steroid and approached Tahlia with a nebuliser mask.  I told her that Jen had obtained an attachment that could be inserted in the CPAP hose which relieved the necessity of having to remove the CPAP mask and put on a different mask each time she required nebs.  Once again she indicated that I didn’t know what I was talking about. Finally I found the extra tube and she told me that it couldn’t be used on the CPAP machine.  I told her that Jen had used it and showed her how it went on. She seemed quite surprised.  She put it on and then said rather smugly that it didn’t work because vapour was escaping.  Luckily I realised that she hadn’t attached the tube where the oxygen goes through to move the vapour and once I had shown her where to attach the tube it was all working fine.  Do you think I got an apology – not once!  I am sure she had the shits with me for contradicting her in front of the doctors earlier.  But too bad.  I am here to protect my daughter. 

Later on in the morning she had to have the saline neb and Anj forgot to turn it on.  I noticed that it seemed to be taking ages for it to go through and as Anj had gone out of the room (she was out of her more than she was in the room this morning) she came and checked it and realised that it hadn’t even been turned on. Luckily I checked and luckily it wasn’t anything really critical to her recovery.   The same thing happened a couple of hours later. Finally Tahlia started working hard again and her response to that was will she take a dummy!  I was getting so furious by this time. It was a ridiculous thing to say. I told her no, she’d never really had one and that was greeted by a frosty look.  She then walked out of the room again leaving Tahlia in distress.  I was just about to call a doctor when she came back and said that the physio was coming.   While we were waiting for the physio she decided to start tidying up the area and asked if I needed the blankets that were folded on one of the chairs (we are using 3 chairs to make a sort of semi comfortable bed.  It’s out of the way in the corner of the room).  Anyway I told her I was using them for sleeping and this was greeted with a frosty silence.  She then went to move away on of the chairs and mum stopped her and again said that we were using the chairs for bed. She was just being a real cow!  She moved the big CPAP machine out of the room, which did make more room available and the area does look tidier, but she knew we were using the chairs and blankets to rest on.

Anyway, finally the physio, Stephanie, came around about 11am and did a wonderful job.  Tahlia seemed to enjoy the gentle pats and actually started to fall asleep.  They did another suction, which she tolerated and she did a couple of good coughs which really helped. After Stephanie left, she settled down well for about 15 minutes but then started working hard again.  After another suction, which she didn’t like but which got a lot of stuff off her chest, she fell into a comfortable sleep.  I can deal with these suctions as I know she needs them .  She then slept for while. 

  Di arrived about 2pm and after another suction at 3.30pm Tahlia fell asleep again.  I told mum and Di that they should go home as I thought I could have a little rest while Tahlia was sleeping.  Of course, as soon as they’d left and I’d settled down, she woke up.  But that was fine. I read her a couple of stories and played with her Dora doll, putting my reading glasses on her head and making them fall off, for which I was rewarded with some lovely smiles.  Then Anj came back from her break – a totally different woman!  She asked if I would help give Tahlia wash and then she would remake the bed with fresh sheets. She said I could cuddle Tahlia in the chair while she was doing that.   I was so excited!  To be able to hold her after not being able to for so long – it was absolute heaven!! She got me a comfortable chair and put a pillow under my arm and I was able to cradle Tahlia in my arms for about an hour.  She fell asleep for a while and then at 6pm another Physio, Sue, came and I had to put her back into bed.  I couldn’t believe the change in Anj, she was just being so nice!  Anyway, while the Physio was here, dad arrived as he had just gotten into Sydney as he’s picking mum up to take her back home for the weekend.  Tahlia thought it was lovely to see him.  After dad left, I put on a DVD and then Scott arrived shortly after so I left and had some dinner and went to bed after killing another cockroach on my floor!  What a delightful place this is!

 When I came back up at 12:30am she was awake and Scott said she’d been a bit teary and unsettled.  But she has now been sleeping for over an hour and seems nice and settled.  Another physio is due around 3am.  It seems a shame to wake her but I guess it will help.

Oh yeah, Dr Harry the Neurologist finally came around to see me and reiterated that he believes there is nothing of any major concern in relation to the MRI.  The small haemorrhages at the back of the brain are not major and shouldn’t cause any problems later on.  They are located in the orbital lobe which controls visual imagery.  This part of the brain interprets what you see, but looking clinically at Tahlia and assessing her responses, for example asking her questions when I’m reading to her about where things are on the page, she  has no problems with indicating the correct answer.  So Scott and I are both extremely relieved.

Well that’s the end of another day.  She started off in a bad way but has come through the day so incredibly well.  Our little girl is so amazing and is an incredible inspiration.

Successful Exhubation – yay!!

Tahlia slept well over night and I slept from about 3:30am to 6:30pm, so I felt fairly good this morning.  We gave her wash first up and she had a bit more sleep.  I then read her a couple of stories and she watched a couple of DVDs.  I even completed her first heart beads necklace.  At 11:00am the anaesthetist came around to get her and I went with her to surgery and stayed with her until she was back asleep.  It was a funny feeling taking her around there today for her 2nd exhubation attempt.  Part of me was hoping that the tube would be taken out and another part was scared for her for what she would have to go through to get to the stage where they felt she would be OK without it.  They have to bring her out of sedation once the tube is removed to see if she can breathe on her own.  I could just imagine her waking up in a room with a whole lot of strangers looking down on her while she struggled to breathe on her own without me or Scott there.  I just felt awful. 

I rang Scott to let him know she had gone in and he said he’d leave home, where he was working from this morning, straight away and come to the hospital.  I went and sat outside in the seating area behind the hospital and had a coffee while I waited for him.  It was so hot outside today – it’s quite bizarre living in ICU as it’s dimly lit with quite cool air conditioning, so it was a bit of a shock to realise how hot it is outside!  Anyway, we got a call around 12:15 advising that she was back in the room and that they had successfully removed the tube and that they were still deciding whether to put her on CPAP!  We raced upstairs and she was awake with the CPAP mask on her face.  It didn’t seem to be bothering her but she was quite distressed and whimpering.  She sounds like a little kitten.  It must feel pretty scary having the mask around her face.  It blows out C02 through the top of the tube, so it’s quite noisy with the air escaping and quite cold where the air is coming out.  Jen got her settled by putting a pillow under her head and we just talked to her and held her hand and tried to keep her calm.  We are using a take home CPAP machine as the big machine can only be used with the full face mask and at the moment we are trialling the smaller, nose only, face mask.  I hope we don’t end up having to go onto the full face mask as it looks awful and terribly claustrophobic.  They discovered quickly that she needs a bit more pressure than ordinary CPAP so have switched her to BIPAP, which is on the same machine, but gives a little more pressure.  She seemed to cope much better after that was switched over and the recession in her chest eased.

 She seems to be adjusting well to it and when mum and Di arrived an hour or so later she smiled and almost giggled at their antics.  It was so lovely to see.  They were just mucking around in front of her, making faces and things and I was saying look at silly Sue Sue and look at silly Aunty Di and she thought that was quite funny.  We put on her “Super Why” DVD and at the end of each episode they do a funny little dance and move their arms about in a particular way.  I looked over to her as I heard the song start and she started moving her arms as if she were dancing as usual.  It was a really special moment.  I had to ring Scott straight away and let him know.

As she started to get tired again she started to cry gently.  It’s so sad to watch her cry like that.  Her mouth quivers and her eyes go red and little tears just fall slowly down her face.  I asked her if she was sore anywhere and she indicated her head.  We thought that the back of the mask may have been pressing on her pressure sore, so we re-positioned her head and Jen gave her some panadol.  Her feet were also absolutely freezing and her body was quite cool, so we put on some woollen booties and covered her up and that also seemed to settle her. After mum and Di left she watched some more DVDs and I held her hand and stroked her head.  Jen also took out the central line in her neck, which I’m sure will make it a lot more comfortable for her when she turns her head from side to side.  Scott arrived just after 7pm and she was happy to see him.  We have to take each day as it comes, but so far she is doing so well.  The recession and stridor is at it’s worst when she becomes upset but when she is calm or sleeping there is hardly any recession at all! 

Jen was fabulous in getting her set up as comfortably as possible.  She has to have nebulised bubescinide (not sure of spelling) – it’s an inhaled steroid that she’s been on before to help support her airway – and after a lot of mucking around, Jen was able to find an attachment that will allow it to be moved through the CPAP machine rather than through an additional face mask.  I am so pleased that they have been able to do that as it will take some of the scariness and stress off her as they won’t be continually moving the mask and waking her up.  It was also initially recommended that she commence physio tonight, but Jen asked if it could be put off until tomorrow as she had been through enough today and I was relieved that the Drs agreed.  She has been stressed out enough today without having someone thumping her chest!

When I came back up tonight at midnight, Scott said that she’d been pretty restless and a bit upset for ages but she had finally settled around 10pm and as of 1am she is still asleep.  Her heart rate is currently 93 (it’s normally around 115 to 150) and BP is 74, so she is resting pretty comfortably.   I am now going to take the opportunity to catch a few more hours myself if I can.   The lovely hostel room that we are paying for is out of action tomorrow for maintenance!!  How ridiculous and to top it off, when I went to get into bed a small cockroach was running through the sheets – yuk!!

Today was fairly quiet and she slept a lot of the day.  Mum arrived around 10am and we helped give Tahlia a “bath”.  She had her hair washed and we poured all the water over her head which basically filled the bed up with water!   She really seemed to enjoy it but was quite exhausted afterwards.  I went downstairs for a couple of hours sleep and, of course, while I was downstairs the Neurologist came!  He was supposed to come back this afternoon, but that hasn’t happened as yet.  Hopefully – I will get to see him – make that I’d better see him - tomorrow.  Even though all the doctors we have seen today (the usual rounds) have reiterated that there is nothing wrong, we still want to hear exactly what has happened and how it may affect her in the future.  Literally a couple of minutes before I got back to ICU Tahlia woke up too, so she really wasn’t aware that I had gone, which worked out well. Mum was fabulous and had her smiling again. 

I went and picked up her first lot of “heart beads” today – I don’t think the string I have is going to be long enough!  The nurse around at Edgar Stephens Ward, where you pick up the beads, was really lovely and even gave her a few more “lousy day” beads after I told her about the cardiac arrest and two bypasses.  Some of the nurses are so precious about crossing off those beads on her chart – it really is quite ridiculous.  You’d think I was asking for the Crown Jewels, not a small jolly bead!

 Around 4:30pm Di arrived and had her smiling and almost laughing, which was lovely to see.  Just before mum and Di left, she became sad again and said her head hurt and tears started trickling down her face.  She is becoming so much more aware of everything going on around her and you can see that she becomes really wary and a little scared any time the nurses/doctors come near her, especially if she hears the suction tube.  It really does break my heart to see that.  I feel so helpless.  Jennifer though was fabulous and really aware of leaving her alone to sleep and was excellent in the way she looked after her.

 She would have to be one of my favourite nurses so far.  She has had an absolutely dreadful life herself as herself as she almost died having her second child (she has 2 girls aged 9 and 6) and two years ago her husband broke his neck driving a fuel train up in Darwin (she was in Sydney).  He is now a quadriplegic and the nightmare she has had to endure getting the insurance company to pay her workers comp entitlements and battles with Council to have their new house completed (it has been specially designed to accommodate her husband’s disabilities and Council keep rejecting various modifications), have been staggering.  In the midst of this she also had to look after her mum who was battling a serious muscle degenerative disease.  Yet through all this she has remained incredibly optimistic and happy and is truly inspirational!  Her husband has learned to live with his disability and even though he is a quadriplegic has some use of his hands even though he can’t feel anything.  He has just recently purchased a special van which has been specially modified for him to drive using his head and a joystick, which is amazing!  He is now looking at starting his own business of hiring out his van (and potential small fleet of upmarket vehicles)  for special occasions such as weddings etc, for wheelchair bound people. They sound like a truly remarkable family and she has inspired me to believe that we will get through all of this and come out the other side “bigger and better”!  You really learn to appreciate what you have when you hear stories like that.

Scott arrived around 7pm and I went downstairs to have some dinner (which Di had brought in – yummy sweet chilli chicken dish with mashed potato and zucchini with tomato and cheese – yum!  And she brought in a small bottle of wine which was lovely and chilled and very much enjoyed!!) and then went to bed and slept for a couple of hours.  Tahlia was awake when I arrived but fell asleep shortly afterwards.  It’s now 1am and the nurse is just about to turn her over.  She has to be turned over from her left to ride side every 3-4 hours because of the pressure sore on the back of her head.  It appears to be getting a little bit better but it still looks pretty awful. She hates being turned but settles pretty quickly afterwards. 

It’s now 1:20am and she is back asleep.  She is last on the surgery list for this morning, so she should be going in around 11am.  I am looking forward to having the tube removed, but I am also scared of what could happen once the tube is gone – catch 22.  I guess we will know soon enough . . .

Tahlia woke around 3am and again at 5am briefly and then went back to sleep fairly easily.  So I got about 3 hours sleep.  (We have one semi comfortable arm chair and 2 hard chairs which we have lined up to make a sort of uncomfortable bed!) She woke properly around 7:30am but was still pretty sleepy and slept again until 9:30am.  Around 10am Kylie removed her catheter and right hand cannula that isn’t being used, so she is able to move a little easier now.  Mum and dad arrived while this was happening and dad left after a little while to go home and mum is now staying for a few weeks which is wonderful.  She was pretty tired after all the moving around and resettling and fell asleep again.  She has been however, moving her right arm a lot better and when I was reading her one of her favourite Dora stories, I asked her to point out something on the page and she moved her left arm up and tried to point at the object .(This hand has an arterial cannular  in it and a splint taped underneath her hand to stop her from moving her hand, so it’s rather cumbersome to move).

Around 1pm, Dr Sabode came in and told me that he had seen the preliminary report of the results of the MRI yesterday.  He started off saying that they were pretty happy and that they couldn’t see any major problems, however there was a small bleed at the back of the brain!  I couldn’t believe it!!  I hadn’t even contemplated receiving any news like that and was totally unprepared for it.  I felt like my heart was about to fall to my feet.  He then tried to reassure me that everything really looked good and that after all the trauma she’d been through that the results could have been more serious.  He said  that he wasn’t a neurologist so not to get worried and that he would organise for the Neurologist to see us this afternoon.  I felt sick!  How could you not worry when you’ve been told your child has a bleed in her brain!  I spoke to one of the nurses (Sally) who said that many people have small abnormalities with their brains but go through life totally unaware.  I’m so glad mum was here as she was able to reassure me that Tahlia was going to be alright.  Dr Gillies came around a little later and also reassured me that the results looked good and that there was nothing to be concerned about but that he would get the Neurologist to come and see me this afternoon.  Dr Sabode came back a little while later to say that the Neurologists were unable to come today but that he would make sure they would see us tomorrow.  During rounds, one of the doctors said that if there was anything wrong the Neurologists would have been to see us straight away, so I am really confident that she is going to be OK.  I was really worried about telling Scott what the results were over the phone and at work, but I knew that if the situation was reversed I would want to know, so I called him.   He was upset but OK once I reassured him that all the doctors were happy with the results.

Wade arrived around 4:30pm to pick mum up and take her back to Di’s, where she will be staying.  Just before they left, a very exciting thing happened – Tahlia smiled!  She moving her right hand around her tummy and found her belly button.  Mum started making a game out of her finding her bellybutton and was pulling faces at her and she just started to smile!  It was the most wonderful sight in the world!  It also confirmed to me that she is going to be alright.  It was like our baby was coming back to us.  I have been so worried that she would be withdrawn and anxious and that her personality would change, but now that I’ve seen her smile again, I’m not nearly so worried.  I rang Scott and he was delighted and when he arrived here at 7pm I was able to make her smile again.  I think I had the best sleep yet (all 4 hours) knowing that she is on the mend.  I came back up to ICU around midnight and Scott left shortly after.  I know he’s exhausted and juggling work, hospital, Honey and Moet is hard work, but he seems to be coping pretty well so far.

It looks like the next LBO will be scheduled for Thursday, although there is a small chance it will happen today.  So we are getting closer to starting the next chapter of her recovery.

We were informed around 5am that she would be taken for the MRI at 8am.  So we packed up all the toys and stuff on her bed and disconnected all her lines etc in preparation for leaving the room at 8am. 

She was a bit sad this morning and a couple of times just lay there with a few tears running down her face – it just breaks my heart to see that.  I wish there was something I could do, but all I can do is be there for her.  She finally watched a bit of one of her Backyardigans DVDs which she seemed to enjoy. In the end she wasn’t taken down for the MRI until 10:45am, which was lucky as she had diarrhoea and we were able to change her just before they took her away. I walked down with her to the CT area and held her hand while they gave her the anaesthetic.   The anaesthetist was really lovely and as we walking down to the next level she was telling Tahlia a “Thomas the Tank” story.  Tahlia was nice and calm and went to sleep pretty easily. 

After she was asleep I had to leave her, so I went to the chemist and bought her a couple of pretty bags to put some of her hair clips in and some lovely Gaia shampoo, spray detangler and body wash – they smell beautiful, like aromatherapy oils.  The Johnsons Baby Bath they use here turned her bright red, so she is obviously very sensitive at the moment.

Mum and dad arrived shortly after and so we bought a coffee and went and sat outside for half an hour until Kylie rang and told me she was back.  We won’t get the results of the  MRI until tomorrow, but I’m positive that they won’t find anything wrong.  Each day she is getting stronger, so it’s just a matter of time until she gets back all her strength.  Dad then went off to do some things for a couple of hours and mum stayed which was lovely.  Tahlia was awake when we got there and was moving her arms and legs a little bit more.  She has been able to move her right arm quite well today, which is a relief as I was a bit concerned there may have been a problem as she hadn’t moved this arm much until now.  She slept for about an hour and then woke up as there was a bit of noise. Kylie had moved her onto her left side, however she has quite a large leak when she is lying on that side (the tube is now too small as the swelling has reduced in the trachea).  It isn’t anything dangerous, it just means that the respiratory machine she is attached goes into “apnea” mode and it thinks that she is not breathing and starts alarming and breathing for her.  Kylie and I spent the next hour jumping up every 2 minutes to turn the alarm off as soon as it went off! 

Then Kylie went to a late lunch and the nurse looking after the baby in the next bed was supposed to look out for her.  As Kylie left the room she jokingly said to the other nurse “don’t let anyone in here who is noisy”.  That lasted all of 30 seconds!  By the time Kylie came back I was ready to slap the other nurse!!  The father of the baby went out of the room and then came back with some baby custard to feed the baby (she’s 7 months).  From that point on they got noisier and louder.  First there was  the squeaky toy being squeaked and squeaked, then a loud rattle and then the nurse herself carrying on “Oh, aren’t you so cute” blah, blah, blah at the top of her voice.  She only looked around the curtain to check on Tahlia twice – goodness knows what could have happened if I hadn’t been here.  I can’t describe how furious I felt!  I’m sure she knew I was angry by the look on my face as she peeped her head around the curtain, I couldn’t look at her.  When Kylie came back I was still patting and comforting her and I told her that she hadn’t slept since she’d left as there was too much noise.  I probably got myself too worked up, but it was just ridiculous!  Oh, and to top it off, the other stupid nurse had the nerve to say me “she had an hour’s sleep before”!  She is absolutely exhausted!  It’s just crazy.  She needs as much sleep as possible at the moment to try and recover, but this baby in the bed next to her has been here a long time so she gets fussed over quite a lot.  That’s fine, but there are still other patients who need care too!! 

Scott arrived just before 7pm.  We didn’t get a chance to talk much as Tahlia had just been turned back on to left side and was having more leakage problems, so when that was fixed I left and went downstairs to have some dinner that Di kindly sent in and then went to bed around 8pm and slept rather badly until 11:20pm when the alarm went off.  I then had a quick shower and came back up to ICU to relieve Scott.

When I got up here, Scott said that she hadn’t slept much as, again, there was too much noise.  Jessie, the night nurse, had put her on her left side again and of course the leak became too large, setting off all the alarms again.  Jessie asked her supervisor (or whatever the nurse in charge is called) to see if she could do anything to help, so they decided to put her back on her right side.  Unfortunately, as they were doing that her mouth filled up with saliver and she vomited.  It didn’t seem to bother her, maybe she’d been feeling a bit sick and that’s why she couldn’t settle, but after that they had to clean her up and strip and re-make the bed.  By the time that was all done, around 12:30am, she was really tired and was finally ready to sleep.  Scott left then and since then she been quite settled.  It’s now 1:30am, so hopefully she will sleep for a few more hours,  so I will try and get some more sleep myself.

This morning she seemed pretty good and she had a pretty good night’s sleep thank goodness.  She seems a little more responsive and is moving a little more too.  She has been more asleep than awake, but that is good as it means her body is healing.  The morphine was completely turned off at midday and she is now on oral medication (through a tube) rather than infusions.  She is also on steroids (dex) which have been reduced from 4 times a day to 3, so she is doing well.  I was a little worried that she wasn’t more responsive today seeing as though she is not having any sedation medication any more, but apparently it takes a few days to get out of her system and she is just tired and needs time to regain her energy again.  She is moving her right arm a little more today – which she has barely moved at all, so I was getting a bit concerned about that, but I think it’s just a matter of taking it slowly and getting a little bit better every day.  

We had to move into another room today because we were the only ones left in a 4 bed room and it’s apparently dangerous for a nurse to be alone, which I can understand, but it was still unsettling to have to pack up and move.  It’s such a silly thing, but after all we’ve been through over the past 12 days, having to move rooms was a bit like the straw that broke the camel’s back – stupid!  I felt really upset and in fact the room we have been moved to is actually a better and slightly larger space, but in the other room we had the bed right next to a big window which looked out onto a beautiful tree and we had a nice large window sill to put all our stuff on.  I’m glad Di was here when we moved as she me from getting upset and helped re-set up the room with all our things, which made me feel better.  Now we are in another 4 bed room just as you walk in the door, so the opposite side to the window.  There were 2 other patients, a young boy and a baby, but the boy has been moved to the ward, so it’s just Tahlia and the baby. 

Unfortunately Scott has to go back to work tomorrow, which he doesn’t want to do of course.  So he came in around 4:30pm and brought me in dinner and a glass of wine to have in my room.  I then slept from 5:45pm to 11:30pm and then came back up to ICU to relieve him.  At the moment (1am) she is lovely and settled and asleep, although the baby in the next bed has been unsettled and crying a lot and has woken her a couple of times.  The baby has now settled down, so hopefully we will be able to get some sleep now!

She slept overnight really well apparently.  But later in the morning her tummy got all upset again and she started filling up with wind again,  Mary and I had to change to the bed and then give her a sponge bath, which exhausted her. Unfortunately her tube moved slightly so it had to be re-taped.  They took all the tape off her face and her face was really red underneath.  The nurse then rubbed her poor little face and then put iodine ointment on it – she didn’t even move.  I felt every little thing!  She was so brave as they kept moving her tube which really scared her.  She couldn’t settle nearly all day, mainly because of her tummy.  I can’t believe they can’t give her anything for gas!  It’s ridiculous.  She is so uncomfortable that it’s not helping her recovery. 

At one point I asked her if she had a sore tummy and she shook her head no. Then I asked if she had a sore head and tears started to role down her cheeks as she shook her head yes!.  That is the most heartbreaking sight in the whole world.  Anyway Libby finally got her settled at 9pm after she managed some more diarrhoea and expelled some more wind so I left her resting comfortably.  Her responses and muscle coordination was much better today, so I really don’t think they are going to find anything wrong with her neurologically.

Another long and emotional day!   I met Scott just after 5am and he decided that he would grab a couple of hours sleep in the hostel before going home.  Tahlia had a settled night and at least 5 hours solid sleep.  Scott came back up to ICU around 10 and then went home, coming back around 7pm.  During rounds this morning it was discussed that the neurology team were being requested to come and assess Tahlia.  Dr Harry ?, the Neurologist, came around  later in the morning and asked some questions about her responses , both physical and verbal, and was a little concerned that her left eye didn’t seem to be in alignment with the right.  He discussed with David Schell and  they decided that she should have an MRI and chest scan to rule out anything sinister.  Dr Harry thinks she has what has been termed Critical Injury Neuropathy, which basically happens to people who have had muscle relaxant for a period of time, been on bypass and basically all the things that Tahlia has been through.  It basically means that her nervous system has gone into “save” mode and isn’t working as well as it should.  She is very tired and not moving her muscles a lot, however she is moving them, so I am hoping that once the drugs (sedatives ie morphine) have been completely weaned that she will become more animated.  It is so scary thinking that there may actually be something wrong.  Scott and I though both refuse to believe that there is anything wrong.  She is responding to us, maybe not all the time, but enough to believe that she knows who we are and what we are saying.  She does look sick now though as she looks so sad and weak. We will have to wait until Monday to see if there really is anything to be worried about!.

Apart from that, she had a nice peaceful day except for a couple of bad boughts of wind and diarrhea.  She is swallowing so much air!  I know her tummy hurts and it’s awful seeing her so uncomfortable.  The nurses are trying to draw it out regularly by syringing that air out of her tummy through her gastric.  We have all got our fingers and toes crossed!

Today was another very long day, especially for Scott!   First up Tahlia had the final drainage tube removed from her tummy, so that was terrific.  They gave her a little bolster of morphine, but she was a very brave girl and didn’t even flinch!

 We were told that the LBO was still scheduled for today and Tahlia’s last feed was at 2am in the expectation that she would be first on the emergency list in the morning like last time.  But oh no – of course that would be too easy!  She didn’t actually get taken until 2:30pm!  Scott stayed the whole time – I really don’t know how he was still standing, but he was terrific.  We both walked with Tahlia to the theatre and the anaesthetists were really lovely and let me actually go into the theatre with her until she was asleep.  Scott and I then went paid a couple of weeks “rent” for my hostel room and went to have a coffee and then Wade met us for .  At 3:45 we got a phone call saying  she was back in ICU and that Alan was waiting to see us.  We were both on tenterhooks of course while she was in the theatre – the events of last Wednesday are still a bit too fresh in our minds – anyway, Alan was in the waiting area with Arji, the doctor who assists him in surgery.  He told us that he had attempted to exhubate however even though she is able to breathe on her own, she tired too quickly and was unable to sustain breathing without the tube , so she was re-intubated.  He said that the repair looked really good though and that there was still some narrowing at the left bronchus and at the end of the trachea.  They will keep an eye on this but hopefully it may just be swelling.  Regardless, he is not concerned about the narrowing because the reconstruction has apparently increased her windpipe by 300%!  So that is a huge improvement for her future.  They are now proposing Monday to try and exhubate again.   She was pretty unsettled all morning, it was almost as though she knew something was going on, but after she came back from theatre she was exhausted and slept solidly for nearly 2 hours.  Scott finally went home about 4:30 and got a couple of hours sleep and came back to the hospital around 9:30pm. 

I helped the nurse clean Tahlia’s teeth with the special little sponges they use (they look a bit like pink sponge lollipops!) and washed her face.  While doing this, I was talking to her and asked her a couple of questions.  Whenever the response was yes, she slowly shut her eyes then opened them again.  It was so bizarre!  It was as if she had developed a secret sign language!  Scott bought her a little pack of “Dora” hair bands and I picked out a pink one with a little flower on it to put in her hair.  I asked her if she wanted to wear this one and she nodded her head.  So it really does look that neurologically she is going to be fine.

It was a bit of an emotional topsy turvy day today.  When I got to ICU this morning at 6:30am, Tahlia had her eyes wide open and Scott said she had had them open for about half an hour!  It was amazing seeing her looking so alert!  She had had a reasonable night, although she had finally gone to the toilet and it had apparently flooded the bed.  At least it was finally out of her tummy (she hadn’t been since Tuesday before the op).  Scott stayed until rounds had finished and all they said was basically that it looked probable that she would have another LBO tomorrow and that she was doing well.  She is now breathing on her own too!!! 

She is of course still attached to the respiratory machine, but she is now doing pretty much all the work on her own, which is fabulous!  On the down side though, she is much more aware of what is going on around her and what is happening to her.  She is getting scared of the suctions and almost cries each time they do it – at least its only 4 hourly.  But it still breaks my heart to see her looking so fragile and scared.  Her tummy continued playing up most of the day and around lunch time she had another diarrhoea attack and needed to have all the sheets removed and the bed remade.  That was incredibly tiring for her as she had to be rolled back and forth and then Joanne did a suction.  She fell asleep for a while but couldn’t settle properly.  Her tummy was still full of wind.  Jo managed to aspirate some of the air from her tummy out of her feeding tube and that helped temporarily and at least allowed her to get a good 2 hours sleep thank goodness.  She just seems so sad and miserable today. 

It was also an incredibly emotional for me today. It just breaks my heart to see her looking so scared, especially when they start up the suction tube as it makes a sucking noise.  Jo asked her at one point if she wanted her to go away and she gave a little nod “yes”!  I had a little bit of a cry over that.  Probably because it’s all starting to catch up a bit as I’m feeling a little more tired.  I am good though. I think we are entitled to have our  “off/emotional” days.  Scott is also looking tired but he says he is getting enough sleep at home during the day.  Honey (our dog) is apparently coping better but is very sooky and clingy when he gets home.  Moet (our cat), of course, just wants to be fed!

The plastics team finally came around this afternoon and just said that it happens quite often and that they would keep an eye on it but its basically just keeping the pressure off the wound and allowing it time to heal using a special bandage.  There’s nothing else we can do about it until it’s had time to heal.

Tonight, after Scott came and after I’d had dinner, I was reading to her and heard a rumbling noise from her tummy and knew she’d had some more diarrhoea.  Scott, Kirby and I cleaned her up and rolled her on her other side.  A few minutes later she went again and she then continued for a couple of minutes letting out an enormous amount of wind.  No wonder her tummy was so sore and uncomfortable.  Finally she’d got it all out and was exhausted!  We cleaned her up again and she settled down a lot more comfortably and closed her eyes again.  Poor little thing.  It was very cute though, Scott kept telling her to close her eyes, as she kept waking herself up and every time he said it she would close her eyes straight away.  It was very cute.

I know it is actually a very good day because she is doing so well.  She is so incredibly brave.  I just hope as they reduce all the painkillers and sedatives that she copes OK.  It’s such a catch 22 situation – on one hand you want her to be extubated, breathing on her own and off all the meds, but on the other hand at least while she is intubated and drugged out, she is safe and comfortable and not afraid.  It must have been so scary for her today as she became so much more aware of her surroundings.  As I said before – she is incredibly brave!! 

The LBO is still planned for the morning and they may exhubate as she is doing so well breathing on her own.  

She is still on a pretty high cocktail of morphine (40 then down to 30) and sedatives, however they are slowly being reduced (by 10% for the morphine every 12 hours until necessary) at the moment.  Today has been really good today though and she has actually taken a few breaths on her own in conjunction with the respiratory machine, so that’s really positive.  She is probably going to have another LBO (bronchoscopy) on Thursday, so they may remove the breathing tube then which will be nerve racking but also good in so far as her recovery is going well.  Fingers crossed!

She is starting to become a little bit more aware of what is happening which is pretty heartbreaking from a mum’s point of view as she tried to cry a couple of times but can’t because she’s too drugged up and of course has the breathing tube, however the nurses are very aware of adjusting the pain relief if she’s uncomfortable and won’t let her feel any more than she has to.  Unfortunately they have to place a suction tube down the airway every couple of hours (was 2 hourly but has now changed to 4 hourly, which isn’t quite as bad!) and to do this they have to disconnect her from her air supply.  That is frightening for her (and Scott & I too!), however it has to be done and its only for 30 seconds or so, but that’s bad enough!  As I’ve said before, we’re just taking one day at a time, but today was a good day so that’s pretty good for us! 

Scott saw her open her eyes this morning and she also responded when asked questions by shaking her head “no” again.  This afternoon,  Joanne, her nurse, went to clean her mouth with the little sponge stick they use and asked her to open her mouth, which she did.  She then asked her if she wanted any water and she nodded slightly.  Jo told her to suck on the little sponge which had the water in it, which she did also.  It was very emotional.  The “plastic team” didn’t come up to check on her yet in relation to the pressure sore from yesterday, so I’m a bit cranky about that.  They had better come tomorrow as she needs to have it seen to!!