An Update as of 9/16/12

Today we are writing with the happy update that we seem to be at the turning point of this journey. On Thursday they started the medically induced coma and he has not had a seizure since then. Yesterday they started weaning off of the Pentobarbital which was meant to be more of a check to confirm that we still needed the medication before we took him under for the next week or two while we waited for the immunosuppression to be fully in effect. That was the thought but then the most amazing thing happened: No seizures! And now he has been off of the Pentobarbital since 3pm yesterday and still no seizures! And on top of it, yesterday morning we were trying to figure out what to do because his fluid kept leaving his blood vessels into his tissues causing him to be dehydrated inside of his blood vessels but swollen in his tissues (to the tune of 50lbs of extra water in his body). But the most amazing thing happened there too: The fluid all went back into his blood vessels! As a result, he is no longer dehydrated and certainly much less swollen. And then the last and most important thing happened: For the first time in 10 days, he opened his eyes! He's not all there and definitely still has a long road in front of him but to see what has happened in the last 24 hours is more than I could have ever expected for day 16. Today I am going back to Las Vegas and entrusting him to the care of his extremely capable team here at UVa. It is sad for me to leave him because his care has been my constant and incessant obsession for 17 days. We have coordinated helicopter flights in stormy weather, sent spinal fluid and serum in unmarked boxes to Spain, pushed on at least a dozen doctors to push his care along as fast as possible, learned a whole discipline of autoimmune encephalitis, transferred the management of two international businesses and in the mean time learned a lot about what this family can do when we decide to stick together.

I am so proud of us as a family and him as the fighter that he is. His LifeTrek has taken a turn that none of us ever could have imagined but it is a hopeful one at this point. I'm sure one day you all will read about it in his next book. ;)

With love,

Bryn