Wednesday, June 20, 2012

Shortening the night...

... because I already don't sleep enough...

Since the month of no seizures post-Hopkins, Will has been averaging two seizures per week.  We have added the Vimpat, but because of potential dangerous allergic reactions, we have to bring up the dosage very slowly.  It takes about a month to get to full recommended dosage.  We aren't halfway there yet.  My fingers are crossed that the Vimpat works like it has for other people with similar seizures to Will.

But for now, it doesn't feel like we're doing enough.  I know from a logical perspective, we are doing all that we can.  It is just very slow.  And our chances of finding the magical drug combination and dosage is so very slim.  Some days it is hard to stay positive.

We remain vigilant in checking on Will after he goes to bed.  Thankfully his seizures remain pretty typical on that front - always occurring at bed time.  Because of this vigilance, his seizure duration is short.  The emergency medicine works quickly, and he's back to bed in less than 5 minutes.  Because we catch the seizures early, the effects on Will are much less than when he's been seizing for several minutes before we've found him.

On the nights when he has a seizure, I get upset.  It is distressing to witness.  It doesn't get easier after hundreds of witnessed seizures.  I just get this overwhelming sense of dread over me.  And despite my emotional tiredness, it is on the nights of seizures that I stay awake late.  So late.  Keeping watch.  Taking note.  Shortening the night. 

I guess from an illogical perspective, I think that the longer I am awake, the lower the chances that I would miss another seizure.  I am so honestly and brutally afraid that there will be a time that we do not catch an odd ball seizure in the middle of the night. 

When I stay up this late, I hear the noises that I miss when I go to sleep at a normal hour.  Otis' dreaming snorts.  Matt hitting his head against the wooden side rails of his bed.  Luke talking in his sleep.  Will straining against his weakness to shift position in bed. 

I pass the time by catching up on my scrapbooking.  With the holidays in 2011 and the Hopkins hospitalization two months ago, I got very behind on my scrapping.  Like 7 months behind, my largest deficit ever.  Here it was April and I still hadn't scrapped Halloween.  Since we've returned from the hospital, I've caught up quite a bit... most of that during late nights such as tonight.  Though it is bad because it is indicative of how many nights I've stayed awake on seizure vigil, I have caught up now to the beginning of April 2012. 

I'm tired.  Its late.  Tomorrow we step up another 1 mL on the Vimpat.  Keep your fingers crossed.  We need something to work.  Something has got to stop this increasing seizure activity.

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