OK, so we came home on Tuesday night, which was good. We don't like being in the hospital for long periods of time. She did well when she was there, no really respiratory problems, all was fine. They did an EEG on her that afternoon. Dr. I., her neurologist, came in to tell me the results. Apparently, there were some abnormalities that were found. So, this means that she "could" have a seizure again one day. It doesn't tell us if she actually had one on Monday when she stopped breathing. It can only indicate that she "could" have one again. Not exactly the best news.
He gave us 3 options, 1 - wait and do nothing, 2 - put her on anti-seizure meds, or 3 - give her a 48 hours EEG. He recommends doing the EEG first. So I got that scheduled as an ambulatory one right now. We're just waiting to confirm again that's what he wanted. He wrote that on the script, but her discharge papers said video one, which means she'd be in the hospital for those 48 hours. Unfortunately, we couldn't get her in for the ambulatory one until Sept. 15th. They only do the hook-ups on Tuesdays, and disconnects on Thursday. And they were booked until the 8th, but that's their first day of school.
She'll miss 3 days of school as it is with this, she can't go to school, be active, etc... when she's hooked up like this. That should be interesting, since her brother will still have to go, without her. But we'll deal with that.
Now, we could start the meds just to make sure, but we're not really comfortable jumping right to that. Since we can't really know for sure that she's even had a seizure, we don't really want to start down that path. We'd rather have some more information to see what's going on. Get a longer-term, deeper, bigger picture of what's going on.
I think that's kind of it for now. We did see the nutritionist again, went over things, and she's still not convinced that all of this is only from calories. But nothing else to do there.
Dr. S. was wonderful this time too!! She's going to look into getting pre-authorization for all that blood work that Dr. L. wants to do. So that there's no denying it by the insurance company down the road. And she's going to see what we can do about a PT program for Peanut, something to get her more active, but not with us. She doesn't always respond to us very well, but someone else could really help her. Plus, we asked for extra pulse ox monitor cords, the ones that stick to her toe. We got home from an all-day trip to Kiddieland yesterday to find the box of them, shipped from Apria! So it was super quick!!
The one piece of good news is that we got the results of her bone age scan they did on Monday. Dr. S. said that her bones were the age of a 3 1/2 year old, which is good. I wasn't there, she told husband, but he said that as in most things, younger is better. It means that her internal body isn't growing beyond where she's at either.
I think that's it! As I mentioned above, we went to Kiddieland yesterday! The kids had a blast!! Nutty Buddy went on everything that we let him. Even the higher swinging boat thing, the Scrambler, and all that. But Peanut also went on the roller coaster and the log ride, which was a lot for her! It really was a great time, so glad we got to do that, and that she was out in time.
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