Hang in there Lisa! I'm sorry it' come to this. You know 2 years ago we started out chatting about Gage's medical conditions and it turned out we had certain things in common. I wish we lived closer.....
I will always be happy to help in whatever way I can with thinking through Gage's medical stuff. I am so sorry that things didn't go better with his overnight observation. Since he isn't normally on a monitor I'm not sure what his typical sleeping sats are when he's breathing through his trach but if I recall you said they are in the 80's. Exactly how many points lower are they when capped vs not? And what does he look like? Is he sleeping well? Comfortable? How does he sound?
What I know you don't want to hear but need to, is that day time capping success does not equate to night time capping success. Kids with airway issues and other medical issues are going to be more prone to having Obstructive Sleep Apnea than your average child. Something in their airway obstructs while sleeping due to decreased muscle tone. It can be as simple as the tongue falling back. The vocal cords can obstruct or the nasal palate can relax and constrict.
The other thing to remember is that he does have a cannula in his airway. Though I think he was downsized so it's not too big. So he could do better
trach free. The only way to really know for sure is to decannulate and see how he does. But because he has low tone and a nasoendoscopy shows decreased movement of the vocal cords he is probably going to have a harder time while he sleeps. He may be compensating for some difficulty while awake but can't while asleep. Now that he's capping so well it might be worth asking for another nasoendoscopy while capped so the ENT can really see what's going on down there at the vocal folds. My hope is things have improved and he looks better than last year. The doc should be pretty impressed that he's been capping.
The other thing you could do is inquire about CPAP. And you could ask for them to do a true sleep study at a sleep center to see:
1) How bad is the OSA (remember he HAS to be capped during the study for it to tell you what you need to know). You need the sensors to the brain, chest legs etc. This isn't just a pulse-ox in the hospital during sleep.
2) How well does he respond to CPAP? During the SS they start with none, then at the lowest setting, see how the child sleeps, increase if needed, repeat until they find the setting that gets the child into the "normal" range of sleep disturbances. If he does well with a low to moderate CPAP settings he might be a candidate for decannulation with CPAP, especially if nasal prongs or a nasal mask work for him.
We did a SS for Ainsley in November. The results though weren't good. (Ainsley needed a full face mask and high settings.) And then you know from the blog about all the Cincinnati stuff. So the situations aren't exactly the same, I think Gage does better than Ainsley with his cap, but there are some similarities. In our case her airway is good enough to cap during the day(most of the time and depending on trach size) but it's not good enough for sleep, maybe never will be. Though I am eager to see the results of the tonsillectomies she's having next Monday.
It is frustrating to be so close and yet still have obstacles.