Her Life

Her Battle with Biliary Atresia

Carisia was born with a diseas called "Biliary atresia" its a rare disease of the liver and bile ducts that occurs in infants. Symptoms of the disease appear or develop about two to eight weeks after birth. Cells within the liver produce liquid called bile. Bile helps to digest fat. When she was 3 months she recieved her first surgery to avoid more liver damage that would eventually require a Liver Transplant its called "kasai procedure" a few months later we learned that it was unsuccessful and over the months her health worsened, Her eyes were going yellow her belly was slowly retaining more fluid and at 13 months she Fell into a Coma she remained in Coma for 3 months & on March 14, 2004 around 2 a.m. I got a call from the transplant committee that they had A compatible Donor for my daughter and that they were going to start her preparation at 5 a.m. as her mother durng her surgery all I could do was rock back n forth  cry & pray it was one of the longest days of my life but after 8 hours in the OR she was responding well and she was recovering better then expected. Finally after she spent 8 months at Denvers Childrens Hospital She was sent home with over 16 medications throughout the years they lowered her doses & removed medications but still she faced a long road ahead of complications the biggest one was " Liver Rejection". We had no idea how much or big of a Battle she was facing it was definately a very scary roller coaster ride for and my family as well.Through out the years we had our share of Countless Hospital stays very many visits to the ER not to mention weekly lab draws clinical visits to Childrens Hospital in Denver every other week but In 2016 she was diagnosed with "Cirrosis of the liver" meaning that her Liver was showing signs of tissue organ scaring during that  visit we learned that there could be a chance to reverse the scaring with managing her care and medications better. On the other hand She was still running a high risk of developing more complications and the damage already done to her liver would lead to more infections causing more scaring to her liver, With little hope and only 13 at the time she did awesome managing her selfcare with minimum exposion to virus invisible to the human eye and the many different  colds that she was exposed to mainly when she attended school, On July 11, 2018 she woke up feeling weaker then usual not to mention with more  pain to her abdominal then anything, as I drove her to the Memorial Hospital North she asked me to pull over because she was feeling very nasuas then she said she had the urge to throw up so as I pulled over She opened her door barely leaning over she started throwing up Dark red Blood along with huge Blood clots I was so shocked with what I saw that I immidiately called 911, after getting her stabled she was transfered to Denvers Childrens Hospital, after a number of test they said that she had varisus in the  esophagus that had errupted & to stop the bleeding they needed to do a immidiate "banding procedure" during her Hospital stay we learned that she had also developed"portal hyper tension" wich required her to use oxygen on a Daily basis to help her brain get the oxygen lacking and flowing back to her brain. July 2018 the medical team pulled me into a conference room and dropped the devasting News that her medical condition had advanced to a very severe chronical liver failure and Now her New diagnosis was now "ESLD"End Stage Liver Diseas" in September 2018 she was not considered a Second Liver Transplant candidate and her Life expectancy was not very long she would be Lucky to make IT to the end of the year, As her mother I tried to find a medical solution to help my daughter because at that moment I was determined to keep her Alive I did alot of research and finally thought that by driving out to Georgia and presenting Carisia to the transplant committee that they would reconsider the medical decision made by our GI team in Denver. In November right before her 16th Birthday she was not to happy with me and my decision on driving us out to Georgia and Ohio just because I was not giving up she ended hospitalized again and early December on our way back from our meeting with the entire transplant committee Carisia took it upon herself to tell me exactly what her point of view was on her medical condition, Well she started out by asking me with her eyes very watery why I continued to fight for her and why was I selfish? I pulled over and said "excuse me" she broke down crying telling me to ask her if she wanted another transplant and if she wanted to keep fighting as i went to hug her we both broke down crying like babies for once I felt like I had failed as a mother to not once take into consideration my daughter's input on her own health, Carisia had every right to talk to me the way she did to put me in my place and think of her well being and her feelings and not mine for once, After hearing my daughter tell me that she was just suffering more and that her pain was more intense than ever she asked me to back off because she didn't want to strart her pain all over again and by her recieving another transplant if she survived her Surgey she would only be setting back in life and to start everything over was not what she desired when she said, mom im scared for you not for me she said i fear that by you setting me free you have to promise me that after im no longer here you will be braver than ever you have to promise me that you will be there for my baby boy and my sisters "mom" you cant drown yourself in sadness there going to need you more then ever, plus just remember that i will no longer be in pain our i will no longer be going through all this medical B.S!!!! After all that crying we stopped in Kentucky to rest little did we know that by Carisia jumping into the hotel pool her deseas would be the cause of her body going into a complete coma the following day on our drive back to Colorado we stopped in Corbyn Indiana to fuel up Carisia asked me to help her out the car because she felt a shortness of breath As i helped her into the gas station i noticed her feet were beyond swallowen I looked at her and she said "MoM" at that very moment she had another bloody episode the store clerk said the hospital is just around the corner you will get there faster then it would take the ambulance to get here, The clerk helped me carry my daughter into the car I drove around and the ER security comes running out with a wheelchair my daughter was weak she could barely stand her face was pail her lips were all dried and bloody and she started shaking so as the nurses and doctors prepared her for intubation she decided to go live on FB and update her friends of her heath not for a second thinking of condition she looked at me and said please stop crying lady you act like this us our first round of this crazy rollercoaster, 2 hours later she was transferred to Cincinnati's Children's hospital in Cincinnati Ohio, On arrival i was not prepared for the shocking incident that my daughter had just went into a coma after she was treated for stability she was finally ready to fly back to Denver on famous holicopter the Flight For Life Carisia looked very tired but she was ready to finally get out of a Hospital that she was not comfortable in,  Carisia returned to Denver Children's hospital as my son and I had a long 18 hour drive ahead of us as soon as she landed on the rooftop of the Hospital she called me to check on my driving status her main concern was how long before I was going to be at her side the entire time not once did she update me on her health she was talking to me normal laughing like usual and telling us jokes about her experience in the holicopter wich made our drive easier knowing she was ok. On arrival the GI team pulled me into a medical conference that i was expecting a few months prior but the unforgettable day that I will remember for the rest of my life & I dont ever wish on any parent is when a medical doctor drops the Reality that your going to lose your child very soon, For me and my family December 21,,2018 my heart felt stabbed by the following words spoken by the GI team "Carisia is at her last stage of her deseas"you would be lucky if she makes it past the new year, but your child is  now a terminal ill child  and she is medically now a Hospice patient, We will let you & her decide what her wishes are as far as where she wants to spend her last days, After speaking with Carisia she thought staying in the hospital was best but after reconsidering her decision she decided to return Back home to Colorado springs and just continue toenjoy the rest of her days with her family give those who would like to say there final goodbyes but mostly wanted her clóse Friends to be able to see her visit with her but mostly to be with Her Bestfriend Rene Ruiz. Carisia went home and just continued to live her life like she always did this time she was living life without boundaries or restrictions, She continued to fight 19 days more than medically expected just to prove them wrong and to remind us that she was a" Warrior Inside" The day We All feared came  On January 19, 2019 at 2:48 p.m. Carisia's  Battle with Biliary Atresia finally ended and my Baby Spread her wings she was finally free from all the pain and all the suffering.