It's 10p.m. and I would say that Hope had a very bad day. This afternoon she started having violent seizures that shook her whole body, followed by twitching, and then more seizures on and off. We gave her the Midazolam, which didn't help. She eventually calmed down to her normal amount of seizures, but looked so pale. Then she started her screaming/seizing episode around 7p.m. again. It's rather predictable, but surprising she started into it with the midazolam on board.
Even now, she's barely sleeping, we can see her eyes fluttering. I think she just has so many little spasms that keep waking her up.
I'm having ongoing issues with Neurology, trying to get an increase in the Midazolam. I spoke with the Palliative Care team today, and they are going to help me with this issue. I also spoke with the case coordinator, who is also going to speak with the doctor. I'm getting a lot of support from everyone, except Neurology.
Too much time on the phone today, when I could have been cuddling Hope. Hey, I should get one of those cute little ear pieces, so I can walk around with the phone tied to my head!
We're off to pre-admission clinic tommorrow, but I kind of doubt that they'll be able to do the surgery with her so sick. We'll see.
1 comment:
Good luck tomorrow. Hope that she is able to have the surgery and you can get on with things....sorry to read that she had an awful day. Thats hard. Thinking about you.
P.S. an ear piece!!! thats a great idea...multi tasking....
Post a Comment