Monday, March 23, 2009

What happened?

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."

26 comments:

Chrissy said...

So awful, for you and for her. I'm so sorry.

kate said...

My heart aches for you, all of you.

tutugirl1345 said...

I'm so sorry. I hope y'all can at least figure out how to avoid these episodes soon, if not altogether figure out what's causing them. I hope BOTH of you feel better soon.

tierd said...

I am so sorry. I wish you could pretend it didn't happen, too. :(

Christine said...

So sorry. I had hoped so much that she was done with them. Thinking of you guys.

painted maypole said...

i just cannot imagine. Any sickness is hard... but this??

Kyla, you are a strong, stong mama bear.

Mimi said...

Oh Kyla, noooooo. I'm sorry. I'm amazed at how KayTar is becoming a witness in her own episodes: sleeping on your pants. That's really articulate. It must be heartbreaking for her to disappear from you like that.

Jaden Paige said...

I don't know what to say except be another echo to those here already... I am so sorry for you both... Can't imagine how hard it must be to sit there idly, just waiting to know that she is back, she is better, she is your girl once again.

I hope, however futilely, that this is the last one. My thoughts are with you all...

Amy Y said...

Oh you poor things :(
I'm sorry but glad it's over!

Chaotic Joy said...

I am sorry friend, I am. And I hope she never, ever, goes there again.

Mad said...

It's hard not to play detective. It's hard not to bring all the science and reason you can to the table, isn't it? But she just keeps foiling all logic and that's what's crippling and what leads to the f-words b/c you hare robbed of all reason and all control.

Ah, hon. I wish I could give you a big hug.

Lisa b said...

I'm glad she is better Kyla. I cannot imagine how difficult it is for you to get through these.

Erin said...

Ugh, that's so terrible :( I'm so sorry.

I've read your blog since this summer, de-lurking just to say that at some fast food restaurants, the french fries are cooked in peanut oil, maybe it had some relation to KayTar's episode?

Just a thought, although if you went to McDonalds the fries are cooked in vegetable oil (or so they say). At any rate, here's a list of everything on the menu so you can see if anything might have triggered something with poor little KayTar.

http://nutrition.mcdonalds.com/nutritionexchange/nutrition_ingredients.html

I hope she gets well soon and I hope you're put at ease soon as well.

Woman in a Window said...

You don't have to explain anything because I think any mother would be simply overwhelmed and scared. You are overwhelmed and scared and you all deserve better. Here's hoping things get better again.

flutter said...

oof, kyla.

mamatulip said...

Oh, Kyla...I'm so sorry. I wish I could wave my magic wand and give you the answers you are so desperately looking for.

Junie's Blog said...

Poor Kaytar. I wish you could know the cause. I wish she'd never have to go through another episode. Ever.

~aj~ said...

I think about how I have felt during Adam's various illnesses and I know that doesn't even COMPARE to how you must feel when KayTar goes through something this extreme. From one mother to another, your strength amazes me.

I hate it that she had another one. And a bad one at that. I just hate it, Kyla. :(

F*Lush said...

Kyla, my heart just breaks for you and Kaytar each time she has an episode. I know that helpless feeling all too well and the frustration with the mystery of it all. I spent hours upon hours researching for my Roo when she was sick and there were no answers. I wish there was a way that I could wave a magic wand and make all Kaytar's yuckies go away. And although I can't do that, what I can do is research. Would you mind if I left comments here or emailed you with some thoughts? Sending you and Kaytar many prayes, much love, and MUCH HOPE!

Janet said...

I don't know why it happened, I'm just sorry that it did.

jeanie said...

Lots of hugs to you and your family.

I wish there was a diagnosis, a reason you could pin down and find out the WHY you need.

jo(e) said...

Oh, it's just so difficult and unfair.

Hugs.

Magpie said...

I wish you had answers.

InTheFastLane said...

Back again, in the land of ambiguity...so hard.

crazymumma said...

i don't know. I cannot remember if you were reading me when I had those auras and weird fainting episodes. And they tested me for everything and found nothing.

What I am trying to say is that the brain is a mysterious and uncharted place.

But I still wish this was not happening to your little girl. its lousy.

sheree said...

I don't even know what to say. What I do *want* to say is that I think YOU are amazing for holding it together the way you have. Amazing.