The latest - the good, the bad, and the ehhh...

OK, so I just got here and hubby left. Apparently it was a bad night! She was tossing and turning a lot, lots of alarms going off on her machines, her BiPap came undone, all sorts of things. And hubby said that the nurses never came in, not once!! He had to go out there to get the nurses! He was extremely pissed off!! I mean, there's a reason these machines have alarms, and they're hooked to the nurses station. And especially since it went off multiple times throughout the night. He also had to change her pull-up 5 times during the night.

Now, as for today, she's had her lab work done, CT scan done, and IV taken out. As long as she drinks water through the day, she can keep the IV out. That's good since it's in her right arm, and that's her coloring arm. She had a few things done with the CT scan too, I'm assuming contrast done, since they had to put something into her IV that made her feel warm.

She's sitting up in the chair again too, on room air, staying good. She looks better too. Although she's coughing more, but the docs said that's a good thing. It's a wet cough, and she's getting a lot of that gunk out of her chest.

Then, about 20 minutes ago, Dr. S., one of the peds, came in. She said she looked a lot better too, and the coughing thing being good. She's been talking with Dr. A. about trying her on Xopenex, it's a pure form of Albuterol. She said that sometimes the pure form can help really open things up. So they're going to try it for 24 hours, and see if it makes any difference. She said it's so much more expensive than Albuterol, but for some kids they use it since it makes them less jittery. But that's not Peanut's problem, they just want to see if the pure form will help her open more.

The other thing is that the nuerologist wants her now to see an nuerophthamalogist. And of course, those are even more rare! LOL! But there are a couple around here. So, that's going to be something else. No idea when/where that will happen, but Dr. S. said that's what Dr. I. wants to do. I'm assuming they'll still want to do the MRI of her brain stem and all that though too.

No word on what the CT scan showed yet, obviously. All I know is that we're pretty much tired of being in this room! But Nutty Buddy is doing well at G&G's. I saw him this morning. He's got a cough thing going, so I picked up some medicine for him. But he was playing, doing all sorts of things there, keeping them busy. But they wear him out every day, so he's been going to bed around 9:30 every night! He's asked when he'll be coming home, but hasn't been too bad about it. I even brought some tulips from Grandma's garden up to Peanut's room. It makes it look a little brighter.

I think that's it for now... when there's more info, I'll write again! Thanks for all the email, comments, etc...