Sorry about the bronch, Chris. We were told at Sam's first bronch that she has congenital subglottic stenosis. I don't know why they didn't catch it when she was originally trached, but I guess it really didn't matter at the beginning because the nose was the bigger issue. Did they tell you a grade or the percent of stenosis? Sam fortunately is grade I and about 30% small than the average. It will mostly be asymptomatic with the exception of colds. With colds we will probably hear her as more croupy than our son.
Again, I am sorry that this was not the news you were wanting.
My only comforting words are that if the trach makes Sean's life easier don't rush the removal. Sam is not sleeping well because she gets very stuffy from nose breathing for long periods. She hasn't learned to mouth breath while asleep, so we are up at least every 3 hrs doing saline and putting her back to sleep. Good thing I had all those saline bullets! She actually slept better with the trach, which is unfortunate. She doesn't desat, so im not worried, but can't get in long stretches. I know it will resolve, but I am not always relieved that she is decanned, especially now that I'm looking for daycare options. Loved her nurses!
! Take care!
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).