Part of me would like to deconstruct this whole episode, and the other part would just like to say "F*ck it." and go back to pretending that they aren't going to keep happening, but since I don't use that kind of the language on the blog, I guess that leaves us with the deconstruction.
I don't know where to start. It was a bad one...I smirk as I say that, as if there are ever good ones. It lasted from 2pm-8:30pm. 6.5 hours, not the worst, not the best. I know I say things like altered consciousness but I don't know that it communicates the reality. She goes from being my KayTar to being a limp little girl who cannot open her eyes, lift her head, respond to anything I say, who only responds to pain and even then, barely. It is a significant, clinically relevant decrease consciousness, this isn't a deep sleep or a lethargic child, it is way beyond that. It is the most unsettling part for me. She woke up and said, "I thought I was asleep on your pants, but I was in your bed!" (she laid her head on my lap in the museum foyer, that was about the time she stopped responding to me). It seems like she doesn't remember anything about the interim. I asked her what happened and she said, "I felt spinny and went to sleep on your pants." After she was out of the episode, I gave her a much needed bath. I think tried to give some Pedialyte through her g-button, she vomited it up as I was putting it in. She continued to vomit everything up all night long. Typically, when an episode is over, it is over...vomiting included. Around midnight I gave Zofran and a teaspoon of water and we promptly went to bed, it stayed down, thankfully. In the morning she continued to vomit. Finally around noon, she started holding down teaspoons of Pedialyte through her g-button and by bedtime, she had kept down about 8 ounces of fluid. Initially, I thought maybe she had a stomach virus secondary to the episode, but today I really think it was just residual effects of the episode.
So why did it happen in the first place, after 6 glorious episode-free months?
It was an exciting day, but we've had a great many exciting days in the last 6 months.
We took a car ride into the city, but we've had countless rides into the city since the last episode.
It was a sunny day, but there have been many sunny days since these stopped in September.
She seems to be sick now, coughing, stuffy nose and so forth, but she has been sick dozens of times in the past 6 months without incident.
On Friday, she had 2 Pediasure feeds instead of 3, because she wanted to drink the last one and didn't quite do it. On Saturday, she only had only had her first feed by the time the episode started. We've had other days where her feeding schedule was slightly altered and this didn't happen.
My mom took care of the kids on Thursday while I went to Austin to give my speech in front of the House committee, and she noticed KayTar's eyes do that odd thing (click here for video) they used to do so frequently. We haven't seen it happen in ages. Is it related?
Honestly, I don't know what happened or why it happened. I don't know when it might happen again. I just wish it hadn't happened at all. I wish she was free of these things. I can't articulate how much I hate watching her slip away from me; how difficult it is to twiddle my thumbs for hours while she is unreachable; how I repeatedly wander into the room where she sleeps, cuddling up next to her, stroking her hair, and whispering into her little ears that can't seem to hear me; how I have to wipe the vomit from her mouth and nose, because she isn't lucid enough to move her own head; how every time I hear her moan I come running, hoping that maybe she is emerging; how I feel sick every minute until she finally opens her beautiful blue eyes and says, "I'm better."