Quick little update

Just wanted to give a little update before going to bed tonight. I spent the past 50 or so hours with Peanut at the hospital. She's doing better, and was getting better at talking over her trach or covering the hole with her finger. BUT - today she got her Passy-Muir valve!! This is a valve that goes over the open hole and lets her to speak. It allows air to come into the trach tube but then when she exhales, there's a membrane that keeps the air from going back out. So the air then goes through the trachea, over the vocal chords, and out her mouth - giving her speech!

Other than that, Nutty Buddy went back to school today. He still has a lingering cough but he needed to go back. As much as he complains about it, he just doesn't like going to school. Except he does always come home saying that he had fun. Today he did so good that he was chosen to pick out a prize at the end of the day.

I've been checking in on the paperwork for all the other stuff that we need to do. Still getting the home nursing care set but we need to wait for this aid waiver to come through. But our paperwork is moving quicker than normal. Plus I'm getting all the paperwork for CMH going too, making sure we stay on top of that as well.

The only other thing today was that she did have an episode pretty much out of the blue! We were all there for dinner and I walked back into the room when it looked like she was bending her neck/head over to look for something. So I said "You're going to get your hair in your food!" Then she looked up briefly and back down again. Hubby jumped up at the same time I got over by her and she wasn't breathing!! He got her head back up but her lips were purple. She started to come back around though and we paged for the nurse. There were about 6 people in there then. We didn't need to bag her or anything, although she wasn't on her pulse ox monitor, cuz that would have shown us she was dropping before it got to that point. But she doesn't wear it all day long now since she moves around so much it doesn't get good readings most of the time.

Anyway, that was enough to give us a little scare again. But with everything else that we've been through, it's a little sad that this is kind of a footnote in our day. She was fine the rest of the night though. Tomorrow we get to have some trach training.