Tuesday, October 12

Update from Caelum: New Treatment

"Kate and Rich talked to the neurologist today. The neorologist was able to look at what is going on with Matt in a much more detailed way than the brain surgeon. She suggested that they try an experimental treatment, a drug that is normally used to treat Parkinsons. What this drug will do (hopefully) is stimulate Matt's brain stem and help him to wake up. the drug won't hurt him at all, the worst that can happen is that it doesn't work. They started him on this treatment today and he will be on this drug for a week.

The neurologist apparently does not have much more to tell us about what Matt's potential cognitive ability or functionality might be if he wakes up, other than that there is such a small chance that he would be 100% normal that she can't put a number to that at all. His lungs are getting better. Alison I think that there is a reason to hope with this news." (from Caelum)


Alison said...

Hi all-- just wanted to mention too that I talked with Caelum yesterday and he said that Matt is able to move some, which seemed like good news to me. But there is reason to believe there is extensive brain injury. Everyone is holding their breath. It's such a cliche -- "if anyone can survive this, he can"-- but it's really true here.

Monika said...

YAY!!! Extensive brain injury does not correlate to extensive problems. Sometimes that just means personality changes or a decrease in mental acuity. Whatever the affect, lets all just hope that he wakes up. That is the most important thing at hand.

Alison Powell said...

Shari Hall (from FB): Here's a small update on Matts treatment. They're starting him on an experimental drug today to get him to wake up. It's a drug used on Parkinson's patients to stimulate the brain stem. Its only been tried a handful of times on people with traumatic brain injuries like Matt's. There is a small chance that this will wak...e him up so it's worth trying! If it does work and he does wake up, it's highly likely that his brain function will be massively diminished though. Please continue to keep him and his family in your thoughts and prayers!

Anonymous said...

"If it does work and he does wake up, it's highly likely that his brain function will be massively diminished though"??

What does "massively diminished" mean for his quality of life if he wakes up?

... Can anyone imagine Matt being enthusiastic about waking up to "massively diminished brain function"? I hesitate to react on too little information, but how does "massively diminished brain function" not correlate to "massive problems"?

I'm sorry, this just terrifies me.

Alison said...

I understand, and I know it's a hard thing to think about and bring up, so thanks for being brave.

I have heard the family has discussed this at length, and that all are very much aware of what Matt would feel about that and respect it. I imagine the idea of that is just as terrifying / upsetting to them.

I can't say anything about details on their decision-making, but I feel reassured that this is very much part of the conversation as they looking at treatments. I had an at-length conversation with a family friend who has been there throughout the week, and we spent a lot of time talking about that very situation / issue.

As I understand it, the neurologist is unable to predict really at all what the damage means. BUT she does believe there is reason to get Matt cognitively active, at least momentarily, so that the damage can be assessed fully (rather than to not do anything and risk making a tragic mistake). I hope that makes sense. The main thing, I think, is that no one knows what the percentage chance is of what kind of brain functioning-- including the doctors.

From the outside the information is unclear and upsetting. But it seems to me the family is really aware of what Matt's desires would be, and I have faith in that.

I want to be respectful to the family too re: the difficult position they're in, trying to balance hope and realism. Because of that, I wonder if extended conversation on this might be better off-blog? You can email me or get on FB to get in touch with folks one-on-one...

Still, thanks for bringing this up. I know it was hard to do and we're all trying to think of Matt and his wishes.