Some thoughts after coming home.

We have been home for a day now. It has taken a little time to be able to write more of a final summary. After having a great appetite, being in good spirits and even getting up out of bed for awhile on Sunday, Adam seemed to run out of steam mid-afternoon. He ended up sleeping for about 16 of the 18 hours from 3 PM Sunday to 9 AM Monday. He also ran a low fever for a little while. He also had a seizure late Sunday evening. That was perhaps the low point of the entire week. It felt like we had gone through all this trauma to still be where we started.

Monday morning, the doctor assured us that it is not unusual for extra seizure activity in the days after surgery. These seizures should not be taken as an indicator one way of the other as to how successful the procedure will ultimately turn out to be. We have seen/heard a variety of different numbers given for the likelihood that the Multiple Subpial Transection procedure will yield a reduction in seizures - 70% (from WebMD), and 50% or 33% from two different doctors here. I know for my own personal coping mechanism, I try not to get my hopes up too high and hopefully I will be pleasantly surprised instead.

So we enter a long wait and see period. They don't want to change more than one variable at a time, so they will keep him on his full meds for now and we will see if he has less seizures. He had only had one seizure in Sept and one in October, so we would need to see no seizures for a good 3 months or so, before we could start to feel like there was a difference.

We have a follow-up appointment with the neurologist and neuro-surgeon in about 1 month. Earlier, when we were in conference with these same two doctors, they made some comments along the lines of never giving up on a patient/and being on board for the long haul. So it feels good to know that a couple of the top doctors in the field are committed to Adam's case. On the last day a different doctor mentioned a technique that is still going through FDA approval trials where a small device is implanted that actually acts like a tiny EEG monitor and when it detects a seizure starting it can perform a pace-maker like pulse to prevent it.

So we forge on ahead. And the ultimate outcome of this first procedure may not even have that much bearing on Adam's prospects as a Deep Brain Stimulation candidate - that is the procedure to address his mobility issues and what we came down to Ft Worth for, originally back in March, anyway. Oddly enough, one effect of this past week is that brain surgery doesn't seem all that scary anymore.

Adam is doing great at home. Again, we can't thank everyone enough for all the love and support that we have felt these past days and weeks. We will keep you posted! Love to you all.