bronchoscopy and nasal dilation this morning

chrismclar · #1 06-22-2012, 01:24 AM

Well I am up and it is the morning of my son's 2nd bronchoscopy. We are hoping the ENT will say it will look good to go ahead and do a balloon dilation of his nasal passage and put stents in. it's been just over a year since the trach was first placed. (on june 14, 11) Please keep us in your prayers. I will update later on today.

---Christine and Keith
Sean born 4-13-11 pyriform aperture stenosis, trach, craniosynostosis, hydrocephalus, g tube.
Juliette born 6-2-05 at 29 wks. and fine now.

kharmasmama · #2 06-22-2012, 10:10 AM

Good thoughts coming your way - hope its a quick and successful procedure.

chrismclar · #3 06-22-2012, 07:06 PM

Thanks Danielle, for your good thoughts. UPDATE: Unfortunately we did not get great news. the dr. did the bronchoscopy but found that he could not do the balloon dilation because the back of his nose is soooo narrow. and as an added bonus, the bronch found that he seems to now have subglottic stenosis. i'm sooo thrilled. sorry for the sarcasm, just really frustrated. the dr. actually said he does not know what to do now besides wait a few years. Little Sean has midface hypoplasia including a very flat nasal bridge, a recessed palate, and a small jaw. All of this makes things very challenging. The ent basically told us to go for second, third, etc. opinions to see if anyone else feels comfortable doing something to fix his nose sooner than when he is 5-6 years old. We are told that is when they can do a midface advancement surgery. IF ANYONE KNOWS OF A CRANIOFACIAL TEAM THAT WORKS GREAT WITH ENT THAT MAY BE ABLE TO HELP US --please let me know. thanks everyone.

SammyJo · #4 06-22-2012, 08:53 PM

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!

More

! Take care!

principe · #5 06-23-2012, 12:29 AM

Sorry for the not good news. Some kids get trached because of subglottic stenosis and others develop subglottic stenosis with the trach. That's probably why so many kids with high grade subglottic stenosis take a while to decanned. But at the same time they are so young and their bodies are still growing that many of the physical problems they have take a while to resolve until their bodies are stronger. I guess time is sometimes the answer.