Today* was exhausting. I am exhausted. I'm hoping to be able to form cohesive thoughts for this post, but I may be aiming a bit too high. :P
KayTar had an episode today. It lasted for five hours, start to finish. She was in pain, she was lethargic, and she was vomiting. She wasn't there. She couldn't respond to us, she couldn't focus or make eye contact, her eyes were glazed over. It was broken into 6 distinct sections, separated by instantly falling asleep. She took a two hour nap in the middle that did not "reboot" her. She threw up 4 times in the five hours. She didn't keep anything down until this evening when it had passed.
This is the only time falling asleep hasn't brought her out of it...even her two hour nap didn't "fix" it.
They started out as 30 minutes long, and now we are up to 5 hours. I want to know what is happening to my baby. I am so tired.
*I wrote this last night, but I was so tired I forgot to hit post.
9 comments:
Oh, how frightening. I'm so sorry.
Where are you? At the hospital or home?
We are at home. We spoke with the pediatrician several times yesterday. She told me to call her if the nap didn't bring her back to baseline, so I called her when it didn't. It took a while for her to get ahold of the neurologist, and by that time she had FINALLY come out of it (about 5:30pm), so she said we could stay home.
We see neurology tomorrow, so she didn't want to make us go in needlessly. Since they don't know what the problem is, they won't be able to help her in the ER anyway.
I'm so sorry. I hope she's doing okay today....that you're getting some answers at the appointment with the neuro.
*hugs*
(don't know what else to say, but I'm thinking about you)
Oh, Kyla. I'm so, so sorry. Your poor, poor sweet baby. Poor you.
That must have been terrifying. Goodness, I hope they have some answers for you SOON. Let us know what happens in neurology...
I am so sorry to hear about this latest episode. I hope the neuro took the time to listen and truly think about what this could be. Did you by chance ask if these could be status seizures and if something like Diastat would be useful to have on hand?
Jen
I wish there could be answers and solutions soon. Ugh. How scary and frustrating.
My goodness, how scary! Hopefully she doesn't remember any of it.
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