June 24 Pat died suddenly and unexpectedly before I arrived for my visit with her.Unexpectedly largely due the preceding ten days which raised our expectations for a complete recovery eventually after a lot of hard work at physical therapy and reconditioning over many weeks and possibly months.
On the 19th of June after a few busy and increasingly positive days, late in the day during a Thunderstorm, Pat was transferred to the Hospital for Extended Recovery in Norfolk, VA. This is a 35-bed hospital specifically designed for patients with medically complex needs who need to stay in an acute care setting on average of three to four weeks. Though located within Sentara Norfolk General Hospital, the Hospital for Extended Recovery is a separate health facility. The proximity to and affiliation with Sentara, assures that if needs change, the benefits of a Level 1 Trauma Center are easily accessible.
This took place after a few days where Pat demonstrated every increasing ability to breath on her own. From two sets of two hours sessions Pat advanced to two sets of four hours, then the following day two sets of six hours, then a twelve-hour session and on the 18th an over fifteen-hour session. But for sleeping Pat was still getting pressure assist from a ventilator overnight.
I was allowed to be with Pat again in the ICU on the 19th, for the first time in a week, until the transport team arrived to take her to Hospital for Extended Recovery.
On the 20th I returned from visiting with Pat just before dinner. I found her alert and focused on recovering when not napping.
Before I left from my visit on the 21st, she had been breathing on her own, without any ventilator assistance for a bit over twenty-nine hours. Pat was clearly tired but nothing like she was during earlier multi hour sessions of breathing on her own. Everything seemed to be going well.
While, probably still several weeks away I started the process of connecting the discharge team/person at the Hospital for Extended Recovery with the appropriate people at the Williamsburg Landing re: transition to their rehab facility. I also provided the Williamsburg Landing folks with a sense of where Pat was in her recovery.
The 22nd was very similar, i.e. a second day of breathing completely on her own as I kept Pat company and occasionally did small things that made Pat more comfortable, e.g. moistening her mouth and/or lips.
I was told by Pat’s nurse during my visit on the 23rd that as she had been breathing without any ventilator assistance for over 72 hours (3 days) she was considered weaned from the ventilator.
Also, her tracheostomy tube was replaced with a slight smaller one and a separate speaking diaphragm attachment was added. The diaphragm attachment required more effort when breathing but allowed Pat to talk OK for the first time in weeks.
Pat also got a breathing (exhalation) exercise device. That she used in sets of ten exhalations four times a day. The exercise was to help her further strengthen muscles she uses when breathing and coughing.
I asked Pat’s nurse about Pat’s care plan. And we got a very good explanation of things coming up, including some advice about modest things Pat could do while still in bed, independent of official physical therapy. Briefly it was pumping and rotating her feet (i.e. working her ankles and attached muscles). Also, trying to lift her feet and with my assistance flex her knees and lift her legs or try to. Pat did the foot exercise several times while I was there. As we talked about appropriate clothes the nurse advised that real socks and shoes were desired for physical therapy, i.e. better than the hospital grippy socks. Once I got home, I gathered the shoes & socks for my visit the following day.
Just before I left Pat & I went downstairs to x-ray for a speech therapy evaluation, which Pat failed. It was a test of the muscles used when swallowing to direct things to the stomach and avoid the lungs. It was explained that failure at this point was frequent for patients on a ventilator as long as Pat had been. There are exercises to help strengthen those muscles, which Pat was to be started on later that evening or the following day, i.e. the 24th.
I found it easier today to engage Pat with greeting cards as we discussed who they were from and Pat could verbally react to them. We went through ten, i.e. had looked at all the cards sent in May and up to the 8th of June. Nineteen more and Pat would have had a chance to enjoy all the cards received so far.
But that was not to be.
