Awakenings - Day +36 & +37

Robin Williams fans may remember the beautiful 1990 film with Robin co-starring with Robert DeNiro, “Awakenings.” It wasn’t one of Williams most popular films but it was one of my favorites. In the film patients in a mental health hospital who had suffered encephalitis were in a long-term catatonic state. Williams “wakes them up” with a risky therapy. Sometimes life imitates art.

Day +36 - June 11

After a rough week of few answers and very little awareness, Saturday was a whole new day. John went from needing 6 units of blood products Friday to only platelets Saturday. He had a slight fever around noon, but otherwise, he was totally aware, and somewhat talkative. Another big difference was that on Saturday he was able to participate in Physical Therapy and Occupational Therapy after a week of inability. The goal was to get him up on the side of the bed and get his body moving again. He said he felt strong enough to stand up with the walker and pivot to sit up in a chair. He ended up walking 5 steps and impressing us all. It wasn’t pretty, but he made huge strides and wore himself out, but it was a good tired.

I read many of the wishes and thoughts people have been sending or posting and he was very humbled.

In the afternoon, Dr. Ken reported that the biopsies of the colon confirmed CMV was causing the colitis. They hadn’t found any of the other possibilities that were feared since he hadn’t shown response yet to the CMV anti-virals. The team asked that we have more patience for the treatment to start helping his body fight the virus.

He ended up Saturday very tired but we felt it was a big success.

Day +37 - Sunday, June 12, 2022

I had great hope of growing on Saturday's success. I took up a protein shake and some cognitive games to work with him to get his brain and fine motor skills going again.

When I walked in, he was alert, had only had mild fevers through the night and was eager try some puzzles and games. We also talked about watching the new “Downton Abbey” film in the afternoon or the original “Top Gun” and asked his nurse to find out when to expect PT. By late morning, I noticed he was less responsive and looking flushed. These are two of the signs I have come to watch for as his fever starts to climb. By noon, he was very quiet and we concluded PT probably wasn’t going to happen. By 4:00 his temp was 102.38 and he was no longer communicating much.

Sadly, life imitated art and the patient had resumed his previous quiet state. When you are looking for a good film, look up "Awakenings" (currently on NetFlix) and hope the anti-virals start having an impact this week and the West Nile Virus stops sparking fevers and confusion. We need his body to stop stressing and continue healing.

Julia