Friday, May 7, 2010

Best Guess

Well, judging by the 20+ dirty diapers over the past two days, I would say we've been dealing with some kind of tummy issue here. I'm thinking he and I had the same mild 24 hour virus, because he went from one seizure Monday to 3 seizures Tuesday (mostly at night -- the same night I felt so bad) to 21 seizures Wednesday. Tuesday and Wednesday, his ketones were a little lower, which sometimes happens with pain or discomfort, and he was having a dirty diaper during almost every seizure (this isn't stuff you can call your pediatrician about for advice, folks).

Wednesday evening, we gave him one extra clonazepam because he had not been able to sleep longer than 25 minutes at a time in almost 24 hours due to the seizures, and that seemed to give him the nudge he needed to get over the seizure threshold hump and into sleep. He fell asleep in his highchair at 7:00 pm and stayed there until we transferred him to bed at 10:30. That whole time, we were whispering and tiptoeing and moving as little as possible, because just as a seizure will wake him from sleep, getting startled from sleep can bring a seizure. And, strange as it may seem, I kind of enjoy those times. There's a kind of excited relief that maybe the seizures are gone for a while. The house is so quiet and you're not worrying about all of the other things that need to be done. It's kind of like when a blizzard or thunderstorm ruins something important but then you realize that you're okay and start making the most of it by reading by candlelight or scrounging the stuff for hot chocolate. We carried Collin's highchair into the living room and took turns taking showers and watched Lost together. Then Kyle gave me the best gift ever and slept downstairs with Collin so I could get a good night's sleep finally. I don't think I moved from 11 till 6.

Then yesterday, the seizure count dropped to 2. The dirty diapers slowed down, too, and even though he had a seizure during each nap, he actually took naps and was alert in between. No seizures yet today, but that doesn't necessarily mean anything.

The thing is, there is hardly ever any way to tell what you're dealing with in the midst of it all. Partly because you don't have enough information yet, and partly because you can't think straight and constantly find your mind wandering off to dark places where it has no business being. Time and perspective are what usually give you a better idea of what has gone on, but who wants to wait for that?


  1. It sounds to me like a good guess and a long week. I'm glad you were able to find a little peace on Wednesday (and Collin too). I also want to wish you a Happy Mother's Day!!!!

  2. "Time and perspective are what usually give you a better idea of what has gone on, but who wants to wait for that?" LOL! Couldn't've said it better myself. I am definitely not in the mood to wait for perspective but I have no choice!

    At least it was definitely the virus! It feels twisted to say this but that is such good news! What you're doing with his current regimin is working! You don't have to change meds or the ratio or tear out all your hair wondering why anymore!

    Hope you both get back to 100%! Love you guys!

  3. Glad you both are feeling better! Isn't Kyle just the greatest husband? Have a wonderful Mother's Day!