Monday, November 16, 2015

First seizure :(

I have some sad news. Although William is doing okay now, he had his very first seizure this morning. It is considered to be a partial or focal seizure. This is brand new territory for us as this was his very first so I have a lot of learning to do. What I do know, after speaking with his nurse, is that there isn't any interventions for a partial seizure, as they remain alert (part of Krabbe Disease progression we cannot control). What it looked like to us was his eyes were rolling up and down, not quickly, kind of like when you're watching someone watch the credits of a movie. It lasted about 30 seconds and both Robert Branch and I were there to talk to him. We believe the trigger was me opening his bedroom door (the sound startled him), as he cried out and then the seizure began. William didn't look scared or anxious, but did look tired afterwards (although he gave Mama a smile when I asked him if he was okay). He's the sweetest little boy I have ever met and I will never understand why this is happening to him. Yes, he was transplanted but also at a point that his body will continue to fail, rate unknown although much slower than had he not been transplanted.
As this is an isolated incident, no action will be taken (as we were directed). He is already on seizure prevention medication, and that obviously will be titrated as needed, secondary affect will be lethargy. If another happens before our trip to Pittsburgh in January or so (we've almost hit our goal to get there, thank you for those that have donated!) We will see his neurologist in Salt Lake City for an EEG.
I am terrified. Please think of our little one and hope this was something that is not going to become the "normal" for him. He's been doing so well.

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