My New Doctor...and The Results Already!

We saw the craniofacial surgeon this morning. He is probably the nicest doctor I've ever had! He was very thorough and Mommy's glad we went, because he basically echoed the same thoughts we were all having. He said I do have a small bottom jaw and he definitely thinks he can do a successful surgery to move my jaw forward and open up the airway. But he said he'd like to talk to my ENT a little more to find out what percentage of the apnea cause is nasal, in my throat, or from my jaw. Because if he said my jaw placement only accounts for like 20% of the cause, then he doesn't see a need to put me through that surgery. But if it's like 60% or 70%, then it's something we need to talk about. If or when that time comes, he said, he'll sit back down with us and talk all about the surgery, recovery, before and after pictures of previous patients, etc. He did mention (really not sure there was a need to, but whatever) that worst case scenario, the surgeries would not fix it enough and sometimes there's a need for a tracheotomy, since that would bypass all of the possible apnea problems. Yeah, thanks but no thanks! There's no way I would ever leave it in! I don't mess with my g-tube button much, but it's a part of me, so I'm used to it. It's always been there. Plus it's fun to spin. But a hole in my throat?! No way! We're not even going to keep think about it though, because Mommy won't let that happen unless it was an emergency.

He explained that obstructive sleep apnea is like someone keeps putting a thumb on your windpipe. It can be hard on your lungs, which in turn can make your heart work faster. Unfortunately, that can lead to heart failure. So obviously we know this is a big deal and we have to do what we can to make it better. We are just taking it one day at a time! Now we just wait for him to discuss me more in depth with my ENT. Also, during my exam he said to Mommy, "So when was her cleft palate diagnosed?" Mommy said, "Excuse me?" We knew I had a high arch, but not a cleft palate! But then he explained that I have a sub-mucosa cleft palate, where it's not a complete hole and the skin is still there. He said 73% of kids with that type never need surgery. So he said it's not even an issue until I start developing speech and possibly sound nasally. But I talk now a little and don't sound nasal, so we're probably okay there.

The medical equipment company called today and said they had orders to bring a CPAP to me. Mommy gave them our information then immediately called the sleep study office. She told the nurse, "If they have orders, then someone has the results!" The nice nurse gave her the results over the phone of Wednesday's sleep study. They gradually turned the air up while I was sleeping and at a level 8 (not the highest, but definitely not the lowest), all of my apneas went to zero. So it definitely helped. The CPAP lady came today and I was not happy to see her. I was giving her the evil eye as soon as she walked in because I just knew she was here for no good. She was a VERY large, tall woman, but still it took her and Mommy over 45 minutes to try and get the mask strapped on my face. It still wasn't on just right and as soon as they let go for just a second to look, I ripped it right off! I was extremely mad!

The lady looked at Mommy and said, "What are you going to do? You can't do this every night like this!" Mommy said, "Yep, I know! That's what we've all been saying!" She was going to just take the machine with her because it's pretty much a given that I won't tolerate it all night, but Mommy said leave it for now. That way she can honestly say she gave it her best shot and that we really tried. Even the sleep study nurse said if I just absolutely won't wear it, at least we know that we have cut the apnea levels in half by doing the tonsil and adenoid surgery. The CPAP lady told Mommy about another client she has with a CPAP. The four year old boy hates it so much that he has been taking small parts off of the machine and hiding them so that it's completely inoperable. I would totally do that if I could. Maybe I'll just blow bubbles on it until it shorts out!