Jennifer and Elizabeth had a great question for me:
If she can breathe w/o the trach for extended periods of time, why does she still have it?
There are two big reasons I still have a trach.
The first reason is that I have a lot of surgeries in my future and with a smaller than normal airway to begin with, having a trach in place is an anesthesiologists dream. My surgery coming up on 1/31 to distract my jaw should hopefully increase my airway but it will always be smaller than what the doctor's would like. The fact that even with my small airway I am able to tolerate wearing a cap for hours at a time is a good sign though.
The second reason is that my airway stability is unknown when sleeping. When I was born, if the doctor's turned me on my tummy then I didn't have to work so hard to breathe since my tongue was not falling back and covering my airway. Since I have never had an official sleep study, it's unknown if while sleeping the same thing will continue to happen. If so, then it's possible I may never get the trach out since I wouldn't be safe to breathe without it while asleep even though I would be fine while I was awake. That leads us to my jaw distraction. The best case scenario is that after the surgery they have me in for a sleep study and I can prove that I can sleep safely with my trach capped. Mommy did a short test of her own with my cap a few months back and in the few minutes I wore the cap my saturations dropped initially by a few points but quickly came back up. That's good news - but I'd have to be able to sleep safely all night capped - not just a few minutes.
So the next year will hopefully give us the answer to this question - can the trach come out? If the answer is yes then the next question my parent will be faced with is do they want it out or do they want to get through a few more surgeries first with the trach still in place.
I can already tell 2011 is going to be an interesting year!
Peyton Nicole Smith