Monday, December 18, 2006

Not all surprises are GOOD

I promised to post, and post I shall. My dear KayTar is having an episode, as I type. Don't worry, I haven't abandoned her in her moment of need...the worst is over. She was in pain from about 12:45-3:15, but she keeps collapsing so we have put her safely in her crib where it is nicely padded.

My parents live about five minutes from our home. In the time it took me to drive from their house to ours, she was suddenly full throttling her way into an episode. She was fine when we left their house. She cried and writhed while laying on my chest for the duration of the pain. Around 3, she opened her eyes (without them rolling back into her head) and attempted to sit up. The first time she sat up, I thought she was out of it, but she soon collapsed and began to cry again. At about 3:15, the crying stopped and she climbed off of me and the couch onto the floor. Then I was sure it was over, and then she collapsed. And so on and so forth until I realized the best place for her is the crib, because while she is lucid, she is also continually collapsing and would hurt herself any place else. Thankfully, she is no longer in pain, and her awareness level is almost at baseline. We've passed the 5 hour mark at this point, which makes it our longest episode to date.

Josh came home to report he has had a nagging headache all day. This is significant because I think he has had a nagging headache every time KayTar has had an episode. We are totally unsure about the reason for the correlation, because most days are like today and Josh is at work and KayTar is at home when they happen. Is it weather related? Allergen related? Is it time related? KayTar is still clipping along at 2 week intervals, which means Josh also gets a headache every 2 weeks. He also experiences true migraines, but those don't coincide with KayTar's episodes. I am so intrigued to get the results from KayTar's Hemiplegic Familial Migraine evaluation. Out of the many tests that have come back negative, I almost expect this one to be positive, because of the correlation between Josh and KayTar's conditions. It seems too related to be a coincidence, but we'll see.

This isn't the post I intended to write today. I intended to write about the awful school parent I was last week for BubTar. Or about the fact that the bathroom was repainted this weekend, because while Josh was using it he decided that the paint situation was an emergency that necessitated an immediate solution. Or about the horror that was babysitting my sister's children this morning. This post could have been about many things, but I didn't think it would be about an episode. The episode came as a surprise, as it always does; and when it comes, it wipes the rest of the world away. It is just us and our sweet KayTar, and nothing in the world mattters more than helping her through it all.

Edited to add:
Spoke too soon. She asked for dinner, I obliged, she vomited. She is crying on and off again. I think perhaps the Motrin I gave her early on controlled the pain element, but has since worn off. We have to wait for her tummy to settle again and I can give her another dose. Right now she is in the darkness of her room watching Blue's Clues from the crib, it seems to be appeasing her for the time being. Poor sweet girl.

Edited again to add:
Grand total: 8 hours.


jo(e) said...

When I read posts like this, I wish you lived nearby so I could come over and give you a hug or something. How very difficult.

On the headache thing -- I get headaches from low pressure systems. I also get true migraines, but I get these sort of pre-migraine type headaches just before a rainstorm or thunderstorm. I never knew what caused my headaches until my Dad up at camp said that he could tell whether or not I would have a headache -- and he kept making these accurate predictions -- and then he showed me that he was simply looking at a barometer. He gets those kind of headaches too.

Andrea said...

Oh my gosh. How horrible. I am so sorry! Eight hours! I agree with Jo(e), I wish I could drive to you and give you a hug.
About Josh's headaches. How about you get HIM tested for allergies and see what comes up? I wonder if certain things are eaten/inhaled and they take awhile before the headache sets in?
I am so sorry for you! What a horrible day. I am glad she seems to be happy in her padded crib. Maybe it helps her relax.

Anonymous said...

My mom got bad headaches before storms, too.

Poor little KayTar.

Kyla, I think I've said this before. You are such a lovely and wise person for someone so young. A gifted writer, too.

Sonia Wetzel Photography said...

Oh Kyla....I'm so sorry. It's the worst thing in the world to watch your child suffer. Bugga goes through periods of headaches, definitely related to the weather. When they are ACM1 related, they're much worse, and not necessarily in any kind of pattern. But he had skull bone and his C-1 vertebrae removed last January, and during crummy, wet (hello, we live in Washington state) weather, his areas of bone removal seem to get achey. Just like people who've broken bones explain.
Again, I'm so sorry KayTar is having another episode, and that it seems to be lasting soooo long. ((((HUGS)))
I second what Raehan said. You are very eloquent. You are also very strong, and the perfect momma for KayTar.

Beck said...

It's Tuesday morning now, and I hope that KayTar is having a MUCH better day. You too. I'm so sorry about yesterday.

JSmith5780 said...

Hope today is a better day for KayTar.


ewe are here said...

Hope you and KayTar are having a better day today...

And I hope the test results come back soon.

Vicky said...

Poor little sweetheart.... It is horrible to see your kids suffer, and I am sure you all feel like you were put through the wringer. Rest as well as you can today. Wishing you a peaceful, calm, pain free Christmas week.....

NotSoSage said...

8 hours? Poor, sweet girl.

Hugs to everyone.

Kristen said...

Oh my. Oh my oh my oh my. I can't even imagine - 8 hours. I hope she is doing better and feeling great by now.

And like jo(e) said, I get those pressure-related headaches too. I will be really interested to find out if this is part of what is affecting KayTar.

Anonymous said...

KayTar was on my mind today...and then no post from you. I hope today was better (Wednesday) and that you both got some much needed rest last night.

Em said...

Poor sweet baby. I hope she is doing better now.