We checked in at noon and in 15 minutes we were in our room. Then the fun started. First I signed my life away stating that I would be videoed non stop. Then the hook up guy came. It was awful. The glue they used gave Cary and I an epoxy high. This is my little one all hooked up.
She is pretty happy. Here is a picture of her "tail" of wires she is attached to.
We were well wired. She could travel to about 2 feet away from her bed so I brought her pink chair so she could at least have something different to do. I also brought 2 giant duffel bags, one suitcase, and Cary's medical binder and my laptop loaded with a new Solitaire game. I figured that I was going to be well prepared this time. In the Epilepsy Monitoring Unit or EMU for short, a parent has to be with the child at all times unless a nurse has pity on you and lets you leave for food. Otherwise you have to eat what they bring you from the cafeteria and that is not pretty. So I was set.
It was still hard. And scary. Every time a new nurse came in they asked the same questions over and over. I asked a lot of questions too. They were pretty surprised that I was only there for 24 hours and that Cary was not having massive seizures. They were also surprised that I was doing PT, Speech and vision therapies. What was I supposed to do, sit around and fret? They did state that they wanted her to do "normal" activities. These are normal.
I'm not complaining. The nurses were great! I loved Donna. She reminded me of one of my friends. She was soothing, funny, and very matter of fact. Plus she let me go get good food. She spoiled Cary shamelessly. Cary was into Donna too. She put on her happiest act for her. Then Marvin and Shannon came by.
Cary loves Marvin! Marvin was a little upset seeing her like this and it is really hard to explain this stuff to him in simple non-scary terms. I think we did O.K. He cried when he had to leave, so of course I cried. I hated not being home.
After a night that involved 3 hours of sleep, Cary decided playing with the night nurse was more fun, I was up and ready to get some answers. I met with the neuro doctor and the results were in. Drumroll....... Cary has abnormal brain activity. Yup. Not a seizure in sight. I was slightly annoyed about wasting time in the EMU for something I already knew, but I was mostly relieved. Now Cary is still at a high seizure risk and still requires monitoring, but it looks like for now we get to skip new treatments. I am so thankful. And relieved.
So we came home today. Cary's hair is a greasy gluey mess.
It will take several (thousand) washes to get all the gunk out. I scrubbed hard. You can't see from the pictures but she has red "burn" marks left from the leads. They will take time to heal. Poor baby.
But we are home. No meds for the time being and the only thing Cary got from monitoring was a cold. We can deal with that. Bed is going to feel great tonight! Or after I post this:). Most of all I am grateful that this is one bullet we have managed to dodge for the time being.
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