A few little updatesfor today

I haven't been updating as often as things aren't changing too much these days. On Friday, they did another bronchoscopy. They were hoping to see about the scar tissue in her trachea, but it was still pretty swollen, so they didn't want to mess with it. They also put the larger trach back into her. There were still to many apnea episodes, so they wanted her to have more air into her lungs.

Peanut's been doing well though. It didn't slow her down from eating! LOL! But her talking has been hampered again. She'll learn it though, I don't doubt that. She's sitting up in the chair all day now too, no more in bed. She's done with all drugs, except lasix until the fluid in her lungs can clear up. But that's getting better too.

The best thing is she's started taking walks. She'll fight us, of course, but she does take a walk all the way down to the other end of the floor and back. Little things that are helping her get better. This will also help the fluid in the lungs, which would get her off the lasix. Plus, it gives her a chance to meet other kids on the floor. There's a boy, D, who turned 16 a few weeks ago, and he also has a trach. He's across the hall from us. And it's funny because D can talk, but not walk, and Peanut can walk, but not talk! It was quite humorous last night when they met.

Nutty Buddy has been doing better with school too. No more phone calls to get him early, he's having good days at school, eating a little lunch, and not crying as much. I guess he cried this morning, but as hubby said to him, "Has crying ever stopped you from going to school!?" And when he realized, "No," he sort of settled down.

He also saw the family therapist that Peanut started seeing, just to give him someone to talk to, make sure he's handling things OK, or at least appropriately. I also saw his former OT, and she gave some tips and said if we ever want to bring him by for a little bit, he can use some of the OT equipment to help him. He has Sensory Integration Disorder, which hasn't been much of an issue in the past few years, until all of this!! So little Nutty Buddy is still our Nutty Buddy!!

Tomorrow they're going to try and get her 48 hour EEG started. That would be great, since that would give us some other information that would be really helpful. Plus, the vent that we'll take home should be coming any day now. Then we can switch her to that and learn to use it. We've gotten good at suctioning the trach, cleaning it, and changing the trach ties. We still need to go through CPR training, the vent training, and trach changing.

I think that's it for now... I'll post more info later this week!