I didn't think we'd get to this point. 7 nights in and no seizures to report. How can this be? I am totally perplexed. Will has been off of all seizure medications for 3 days. They say it takes 3 days for the drugs to completely work their way out of his system. The doctors have told me that over the past 2 days, they have seen a dramatic change in his EEG. The good news is that his seizure medications do something. The bad news is that he still hasn't had a seizure.
The docs have repeatedly called Will's EEG "horrible." I wouldn't make up, or even use that word if they hadn't used it to describe what they see. When I pressed further to figure out what that actually meant, they just said that the activity on the right side of his brain is exceptionally abnormal, and gets many times worse once he goes to sleep.
Will's brain activity after he falls asleep is so bad that it prevents typical sleeping brain activity. Since Will has been weaned off of his seizure medications, he has slept progressively worse. He wants to sleep so badly, but because his brain activity is neurologically preventing him from sleeping, he tosses and turns and gets more and more aggravated.
This is heartbreaking to see. Last night, he woke up at least 15 times in the night. My guess is that tonight will be worse, based on the fact that he's been asleep for less than 2 hours and has already needed to be adjusted 5 times. His feet are flexing a lot and he's just unable to be still.
But this is not a seizure. Despite being off of medications and sleep deprived, Will is not seizing. He is happy during the day, playing with toys and his iPad and enjoying Elmo and Weather Channel on TV. He is eating and drinking well, interacting with visitors, and getting appropriately annoyed when we try to interrupt his "only child" time by Skyping with Luke and Matt.
Not only am I praying for a seizure, but I am praying for a seizure soon. That way, we can get Will back on his medications and quell this abnormal brain activity while our doctors figure out the best course of action. Without that seizure, Will is suffering and there is nothing that I can do about it. I've been on the verge of tears all night. I knew this wasn't going to be an easy time, but this certainly isn't the reason I thought it would be tough.