Wednesday, September 24, 2014

Somebody Who (can stay awake)

There's a song I hear often on my favorite indie station, SiriusXMU, called 'Somebody Who.' It's by Au Revoir Simone and it goes..

I need somebody who can stay awake, somebody who..can stay awake."

I don't know what Au Revoir Simone means by it, but I know that I definitely need somebody who can stay awake - all night!

The good news is that we're close to getting that person.

I started the process for home nurse care through the state before the summer. It's been months of operating on very little sleep. I've mentioned before that Josie can and has had seizures in the middle of the night - anytime really - and someone has to be watching her at all times. I got a call yesterday letting me know we've been approved for nurse care and there are just a few more steps to go! So, I'm thinking in two or three weeks we will (fingers crossed) have a night nurse and we will be able to sleep again!

Last week Josie had three grand mal seizures. Sigh. After the third one, we went back to the hospital for another two nights of video EEG monitoring. As I expected, nothing was captured. She has never had a seizure a day later. The closest together they have been is two or three days. Still, the doctors started a new medicine. We've added onfi and we will soon ween off keppra. This could be the cocktail that stops them!

After note: At midnight, after writing this post, she had another seizure while sleeping. The new med, onfi, isn't in her system yet so it's still too early to judge.

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