Malacia

[bryantem]

For those of you who have kids with some sort of tracheo/broncho malacia that has improved, at what point did you start to see improvement? I have had so many different answers. When she was trached- doc said between 2-3 years. At her first outpatient ENT visit, he said most kids outgrow it at 1-2 years. Pulmonologist says she is out of the range of normal (whatever that is) and the information on the web states it will get worse before it gets better, usually peaks at 18 months and resolves around 2.

Now, I am not trying to compare. I am trying to figure out at what point I should start to be concerned. She has had little improvement in the year she has been trached. At this point, I am not concerned. I do have reservations, like what if it never gets better.

[Niff]

Well I've heard 1-3 years. I was told that it would get worse before it got better, but wasn't given a time line.

Mackenzie has laryngomalacia, but our ENT doesn't mention it at all. It was diagnosed by an ENT at our main hospital and while it's definitely THERE (evident in the omega shaped airway pics we have), I don't get the impression that it's a huge deal. Her regular ENT hasn't mentioned it, and I suspect it's not a problem because 1) she's trached for a different reason and 2) it should resolve itself before the trach is removed anyway.

:hug:s I'm sorry I don't have anymore info for ya.

[Myself]

Hello Beth,

I like you was worried.
We were actually told 1-2 years for Gage's trach....trached due to severe tracheomalacia, and here we sit at year 3.

Gage's bronch was performed in spring of 2009, and I was severly devastated when I was told that puppy wasn't coming out, I couldn't understand as his lungs are so strong and healthy!

I called for a meeting with both doctors, one being the one who gave Gage's trach, and the other one being the one who performed the bronch in 2009.

So I left no stone unturned at this meeting, Gage was the worse case of tracheomalacia they had seen, he had/has a complete collapse of the airway, at 2009's bronch we were still looking at a 70% collapse. This is what he told me, the trach will not be removed untill they are absolutely positive he doesn't need it anymore. He also said for 2010's bronch the trach will not come out, start hoping in the year 2011.

He aslo stated as our children grow and get bigger the collapse becomes less, as the airway gets bigger. He also stated he knows of no adults who are trached due to tracheomalacia. He is positive Gage will outgrow the tracheomalacia and if by 6 years of age he hasn't (he seems quite positive this willl not occur but if) outgrown the malacia what they would do is either surgically stretch the airway or remove the floppy part in surgery and then they would replace the floppy part with cartilage. (he also stated this is very rare that they would ever have to this.) Children usually outgrow this.

Does this help?
I hope it does somewhat.

Hugs and hang in there,
Lisa

[LKN]

If she is stable and is trached only because of the malacia, I'd get a second opinion--even if it means emailing Dr. Cotton her story.

I'm in the camp that thinks having the trach is more dangerous than losing the trach. If there is a way to surgically get rid of it now, why wait for growth? The trach prevents "normal" development--eating (if they are tube fed), talking, social development (can't play in sand and water--have to be watched constantly). Just my opinion.

You know what is best for her, and you will make the right decision.:hug: :)

[LeslieML]

Chase has a 90% occlusion due to malacia, they did the aortapexy in August, stitched his aorta up out of the way..it was hitting the area of malacia every time his heart beat and wouldn't let it stengthen up...Chase will be 6 in Feb and is going on year 5 of the trache with no improvement seen so far...he went thru a one year stint where the trache was removed but it did no good and his stoma never closed up and he stopped growing...this Feb we are having our first bronch since the aortapexy and I am hoping for an improvement...good luck.

[saywhatyouwill]

emily had an aortopexy but it didn't particularly help the tracheomalacia. she appeared to have grown out of it by around 20 months of age, from what i can remember.

[emkenny78]

Our daughter was three months shy of turning 2 when hers was good enough to get rid of her trach. When she had her first bronch about 6 months after getting her trach there was no improvement and they were mentioning that she could be a candidate for the reconstructive surgery but it ended up resolving on its own about a year later.

[JacobKaden]

Jacob had laryngomalacia and tracheamalacia, both of which resolved just short of one year. When the malacia resolved, they discovered the stenosis, so here we are, waiting for answers after a failed double stage LTP. The only thing you can count on with "trach life" is that no two cases are the same.:hug: