We came in on Wednesday morning for a planned 3-day(ish) hospital stay. We are in the epilepsy monitoring unit and are being monitored 24-7 (which means we get to sleep with a few lights on and there is always a video going ;)). Basically we are trying to see where her misfirings are originating from, how her medication is working, and what types of seizures she's having (if she has one while we are here). Madi has been having some odd nighttime behaviors, like teeth chattering, so we are hoping to catch some episodes while we are here so that they can see if it is seizure related or not.
This afternoon I got our first batch of feedback. Basically, Madi has a lot of spikes (aka misfirings) going on. These aren't seizures, however, they are things that could potentionally turn in to sezures. We thought that they were primarily on the left-hand side of her brain, by her shunt, but apparently they are all over. There tend to be more on the left-hand side, however, she has a lot occuring on both sides. This tells us it is probably not because of shunt placement or anything like that. She had some episodes of being upset and shaking last night, however, these were not seizures. We didn't see any teeth chattering yet, nor any episodes of heaving, etc... Oh, and Madi was also diagnosed with epilepsy during our last neurologist visit (the one before this hospital stay), so we can officially add that to her list :).
The doctor said that he is learning a lot about how Madi's brain works and what types of misfirings are happening, but said there is still more to learn, so he wanted us to stay tonight. I'm not sure if he will want us to stay another night or not, it just depends on what we see tonight. He said we will take it day by day. We were told it's 3 days usually, unless you see something early-on and go home early.
We have had lots of guests and are very thankful for the distraction, as Madi cannot leave the room (and I can't leave to eat unless someone else is here sitting with Madi). On Wednesday, my mom came to visit. Today Sharri (from the local spina bifida association) came, as well as our friends Leslie and Ryan, David's parents and grandparents, Conner and David, and our friend's Eric and Darcy and their kiddos. We have also had some yummy food dropped off (thanks Ryan and Leslie!!!!) and are very thankful for that as well. Childlife has been very good to us and has been letting us borrow lots of games, puzzles, play-dough, crafts, and other fun things. We also had a visit from Elvis, a great therapy dog. I am so thankful Madi is so sweet and easy-going and loves playing so much. It really helps our days go smoothly.
I'm headed to bed, as sleeping in a hospital doesn't really happen too well. I will update tomorrow once I know more. Thanks for praying for our sweet girl!
So these are the stickers mom was talking about... SO not impressed (though I did sit nice and still ;))!
... and now I look like a mummy. Good thing today is Halloween!
At least my sense of humor has returned. I call these my "Happy Halloween" glasses and make sure I put them on for everyone that visits.
Can't forget the eye patch!
Madi's great-grandma, Uma, whom she loves very much, and Elvis the therapy dog.
1 comment:
she's adorable. I love her. Praying for strength going through this. LOVE YOU GUYS
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