I went the whole month of October without posting anything! Quick update...as of about a month ago, Zadie lost all of her nursing hours. The insurance company says nursing is not medically necessary, that it's simply custodial care, and the only reason she would be granted private duty nursing is if she would otherwise be in a facility. Our first appeal was denied. We have a second level appeal to file, which will be done soon.
In better news, yesterday Zadie went back to the ENT to try out her Passy Muir valve (PMV). This is a valve that forces her to breathe out her mouth and nose, and therefore through her vocal cords, giving her the ability to make noise and vocalize! After her bronchoscopy in September, she didn't do well on the PMV trial, but it was suspected that she might just still be swollen from the surgery. Zadie is a little under the weather, so I was nervous that it would affect the attempt, but I didn't want to reschedule the appointment again, since the next appointment would have been in a month, and it had already been rescheduled once.
So, it started out rough because she was very upset. With her current size trach, the pressures with the PMV on seemed to be too high. We then changed her trach to a smaller size and tried the PMV again. After calming her down, she did great! The pressures stayed in the range they were supposed to and her oxygen saturation levels stayed where they were supposed to! This is GREAT news. Besides all the numbers looking great, it was so nice to hear her making little noises effortlessly. We've been hearing more and more from her, but this was more "normal" baby noises.
The plan now is once she gets over her current illness, we can start working with the PMV every day. We'll start with short time frames, and then increase each day to get her used to it. In two or three months, when hopefully she's tolerating the speaking valve during all waking hours, we will switch to a cap. A cap is just a little piece of plastic that blocks the trach so she'll be forced to breathe in and out of her mouth and nose. We are shooting for decannulation (removal of the trach) in early spring! I'm trying not to get ahead of myself, though. I don't want to get my hopes up too much. But all is looking good right now! Now we just have to get through cold and flu season.
I'll post again soon!