Tomorrow Colby has an EEG to see if we can catch one of his "episodes" on paper. He's been staring at the lights and kind of spacing out a lot since his first surgery 5 weeks ago. I thought it could be seizures but I was sure I was being paranoid. Turns out his teacher has also noticed them and thought the same thing. His neurologist said she is like 95% positive he is having complete partial seizures that are localized to one area of the brain. If they aren't caught they can progress to whole brain seizures. He had seizure markers while in the PICU after the stroke but they could never catch a seizure on the EEG so they took him off Kepra. She said if we don't catch it and it's very possible we won't because it is Colby, she is prepared to put him on it anyway just to cover him. She's worried about him she told me. At least we have one doctor who will listen.
It's a little creepy because he was doing this before his stroke also and so with his out of control blood pressure and this it is like living it all over again. I never thought I'd ask anyone to pray for my kid to have a seizure but if you read this before 10:30 tomorrow could you do that. I just want him to have one so we can rule it out as just a Colby thing or truly identify it as a seizure. Even a discharge would be better than a normal EEG. A discharge is kind of like a precursor to a seizure and it would show which area of the brain is having the seizures which would help identify which medication would be best to treat him.
So that's the latest update. He got his stitches out this morning and screamed through the entire thing. As soon as I told him we were going home he got really loose and sat in his chair without crying. I think he was scared we were checking back in for more stuff. The neurosurgeon recommended a rhizotomy in addition to getting a pump again. I think they clip a nerve or tendons or something to prevent the spasticity. Not a route I am even going to consider thinking about at this time. First I have to learn more about it, second I'd have to pray long and hard about doing something that permanent and third I'd have to wait to be prompted to do it. Right now all I feel like do is scooping him up and running away from every doctor I see so nothing else goes wrong.
Thanks everyone for the prayers and I'll post more as I know more.