Sorry you didn't get the clear answers you were looking for. I can't imagine how difficult it is after 5 years to continue to be patient and wait for the possibility of more changes. Before I read your last post, I was thinking if there was a way to determine what is causing the obstruction while she slept, that would surely point you in the direction of a more concrete solution. So many kids on this cite have OSA, you would think there would be a way to view the airway while asleep. Especially if it's a matter of decanning.
I do agree with others on getting another option. Easier said then done, because I have said the same thing with regards to maintaining a good relationship. I hope you get more info before the fall/winter, I don't know if I'd have the patience to wait 3 months for an appt, but if she sees one of the best, I guess it's the price you pay. Look forward to updates!
Alex, mom to Samantha born 38 weeks on March 7th, 2011 with Congenital Nasal Pyriform Aperture Stenosis, trached 3.30.11. Grade I Congenital SGS, diagnosed 11/30/11. Also mom to big brother Luke (3).