Tracheal Stenosis post trach?

[dylan719]

Anyone know what the statistics are on this? I guess my current concern is that my son's laryngomalasia has resolved itself, his stenosis was fixed with a dilation and his tracheal malasia has also resolved or not become as big an issue as he has grown, but that underneath the trach itself is some kind of damage or scarring or what have you that will prevent decanulation. How do they determine this without actually decanulating? Does the capping process determine whether this is an issue?

To what extent does the trach itself cause more issues in this area below the trach itself?

[cbissell]

I don't know the statistics, but I do know that it's quite common for kids to have a granuloma (scar tissue) just above the tube where it enters the trachea (not exactly sure what you mean by "underneath the trach itself"). But, I believe the doctor would evaluate this via a bronchoscopy and may take care of this as part of the decannulation process.

[dylan719]

Originally Posted by cbissell

I don't know the statistics, but I do know that it's quite common for kids to have a granuloma (scar tissue) just above the tube where it enters the trachea (not exactly sure what you mean by "underneath the trach itself"). But, I believe the doctor would evaluate this via a bronchoscopy and may take care of this as part of the decannulation process.

Thank you. I just wasn't sure if it was a major surgery like a full airway reconscruction or just something as you said that was part of the decanulation process. We got good news recently with regard to my son's subglottic stenosis looking like it has been resolved, and his ENT said that it looked very likely that he wouldn't need any airway surgery. So I'm just wondering what the likelihood is that there's something we're missing that he hasn't been able to see and/or how big a process it is.

By underneath the trach I just meant the area where they can't see just by going in from above and without removing the trach.

[christyw]

My child had a trach for over 3 years, and she did have some granuloma issues that weakened the airway after their removal. We were very concerned that this would hinder decan, and it sure did not make it easy! Our ENT had Gaithy go through a sleep study at the hospital before decan. We had moved our way down to a very, very tiny trach tube, and the idea was to see if she could pass a sleep study with a capped trach. She didn't do so well, but he decanned anyway. It was a rough ride due to stenosis where the trach had been (also, Gaithy is pretty tiny, so there's not a lot of room in there to begin with - also had tonsils/adenoids removed before attempt at decan). She had a LOT of stridor and breathing issues when the trach was removed, and she ended up needing CPAP while sleeping (via face mask) for maybe 6 months- it was a scary and frustrating process. She finally improved, and while we can still sometimes tell that her airway isn't 100% normal, she can breathe perfectly fine. She just seems a little noisy at times (even when awake if she's been running or is sick) and this is just because there is a narrow area there. But for the most part her breathing is quiet when awake or asleep. She's been trachless for over 3 years and is doing great!