February 17, 2008

Progress this week
Will is off the catheter. He is tethered to his bed at night by a large belt around his torso. The concern is that his balance is impaired and that if he got up in the night he could fall and injure himself. On February 8th he had a barium swallow evaluation. They make you drink a liquid containing barium, X-ray your mouth and neck, and check the X-ray to see if you aspirated any of the liquid into your lungs. On the 8th they judged he wasn't ready to take food by mouth. He had another swallow eval on the 15th and this time they think he's ready. They give him puree'd and thickened food that he can control better inside his mouth. The rehab staff is guessing he could be eating regular food by midweek next week. He would continue on tube feeding for sometime after that to make sure no new problems are created if there's any regression in swallowing.

Mental state
We think of each other's asleep/awake state as being on or off. If I shake your shoulder, you wake up, the switch moves to the on position, and everything lights up. Will seems to have a dimmer switch on his mind. Even when he's awake, some things may not be lit up. Earlier in the day or sooner after he's awake, he might give you the impression that his personality is like a child's. When he's been awake a long time you can see the complete Will there.

Emotional state
Will was evaluated by a psychologist. She thinks he doesn't yet fully understand what has happened to him because she saw no signs of depression, and depression is a step in the normal progression of a patient through a situation like this. I mentioned last week that on the Friday before Will seemed to understand completely what had happened to him and what the implications were. Barbara Sue and Becca had a similar experience with him last Sunday. Last Tuesday Barbara wrote some questions for him to answer about himself, like "Am I a returned missionary?", "Did I graduate from BYU?". They all had Yes/No answers. He answered "No" to "Am I a doctor?" The ladies tried to get him to admit he was teasing them, but he wouldn't.

I think what the psychologist saw is Will's optimism and positive nature. As time goes on we may see more indicators of what is going on in his mind.

He does tease the therapists. They call him the Fun One. From Barbara's observation they enjoy working with him because he interacts with them at a higher cognitive level than most of their patients.

With the above information in mind, I talked to Will's mentor on Wednesday. She is a doctor in Medical Education, the unit that supervises residents. She visited Will while he was in the ICU, and said she had been talking to him each morning since he was admitted to rehab. I asked about the prospect of Will's returning to his residency. She said Will's progress is very much day-to-day and the staff does not want to hold out a false hope to him when they are not yet sure he will qualify to come back. They are concerned about the damage to his cerebellum, which could affect his coordination. (One of the neurologists thought it was so minor that it would not be an issue in his recovery, but he may have been using a different standard of comparison.) The mentor also said they are concerned about where his speech ability will end up.

An uncharted future
Will's uncle, Jim Little (Barbara Sue's brother-in-law), is a neurologist at the VA hospital in Seattle. Barbara Sue called him the night we first found out what had happened, before we knew it was a stroke. He has been doing research for us, and as I mentioned last week, he found the rehab center Will is now in. He has surveyed the professional literature to see what is written about the recovery path of persons with bilateral thalamic stroke. He found one article, written in French.

I will keep reporting on what is happening, with an emphasis on what I think is positive. But in reality, even the doctors are unlikely to know if Will's recovery is proceeding as it should, as fast as it should, because there are so few other cases to compare it to.

Uncle Jim says it takes 6 to 12 months for a patient to achieve whatever amount of recovery from brain injury that he will ultimately achieve. So we're in this for the long haul.