Trachea Collapse At Stoma

[Ainsley's Mom]

I'm getting ahead of myself but sometimes you just can't help but worry. For a long time I've been concerned that when Ainsley's swelling goes down and we try to take the trach out there will be collapse where the trach was. She has a very bumpy stoma and in general has issues with scarring. And when we do a slow trach change it appears to cave in there when she tries to breath, almost like a vacuum is sucking from the inside, which in a way I suppose it is.....her lungs. Aside from the obvious, having a doctor diagnose with a scope, are there any signs that a child's trachea is likely to collapse at the stoma?

What do other people see when the trach comes out during a trach change?

[Gretchen(Celia's mom)]

Celia's looks like the same thing!!!! Her stoma sucks in so much you can't see the whole, sometimes I have to pull at the skin at the side of the stoma to see it to get the trach back in.
Surely though they can fix that if the trach is going to come out for good. Such amazing things they can do now with the airway!!!

[JWorthington]

Sam's did used to that, which we were always terrified about, in case we couldn't get the trach in. I don't know when it changed but now it just stays open when we take the trach out, because the stoma has formed IYSWIM. I don't know what that will mean when (if!) Sam is decanned. Interesting:confused:

Julie x

[KJKK8437]

Well, I don't think this answer gets you anywhere, but here goes. Alex does have a suprastomal collapse. However, we do not see any vacuum at his stoma during a trach change. When the problem was at its worst, what we saw was Alex attempt to breathe and fail. It was like this. If he was exhaling, he would continue to do so, but when he inhaled, his trachea "slammed shut" basically. Then he looked like he was choking and he would turn bright colors. He would gasp and try to inhale repeatedly, and very little if any air would move. He would get the wide-eyed panicked look that so many of us know, but the stoma remained basically the same. If we left him without the trach long enough, he would begin to go pale, then grey, and then pass out for lack of oxygen -- less than three minutes.
(For those of you who are new -- don't call child services. We didn't and don't leave Alex's trach out. This was a hospital test in a controlled setting when it got so far that Alex went limp. At home he is never without his trach for more than a few moments while we change it.)

Susan -- hope that helps somewhat. I wonder if the difference might be a bit what Julie said -- whether the stoma has sufficient skin growth inside to hold it open? Maybe the vacuum is less about a collapse and more predictive of who might need a stoma revision in the future? (This is just a thought that occurred to me -- you know, if the stoma has integrity, it is more likely to have a skin growth so far down that it won't close on its own later? :confused: ) Just a thoughtl.

[suzanne2545]

As you know, this is how Parker went from being trached for vocal cord paralysis to needing a single stage LTP to get decannulated. When Parker was about 6 months we went for a decan attempt. A few days before that I posted on here about my gut feeling that something wasn't right. He retracted at the stoma and turned purple during trach changes. This didn't sit well with me as a kid who we could just pop the trach out and he'd be fine. Sure enough: suprastomal collapse.

Fast forward to a bit before the LTP a year later and all of that seemed to have disappeared. There was no "vacuum" and we could linger a bit (never did for even a minute, but we didn't do it fast either) at trach change time. We'd savor his laugh, he smiled, no color change. We knew better than to get our hopes up but in the back of both of our minds was the "what if" possibility that maybe the collapse had disappeared.

So, I guess that is my way of saying, who knows what it really looks like.

Ugh. I wish there were some concrete answers for any of this.

Suzanne

[mylesmom]

We were always warned about suprastomal tracheal collapse but all Myles bronchs have showed he does not have it. When we do trach changes he has no problems at all and it does not appear his stoma is "sucking" in or closing.......

I think there are also varying degrees of collapse. So, perhaps if there is some collapse there is a simple procedure to fix it........? I don't think it always entails a full LTP.

Anyway, good luck!

[Ainsley's Mom]

Thanks guys that helps. I suppose there is no way to know at this point and I should try to follow my own advice and not worry until I know I have something to worry about. Of course that's not so easy to do. We have been hearing more and more air from her mouth but I just don't have a great feeling that things are going to be easy for us. The appointment with the new ENT is really only weeks away and I'm hoping I can get him to agree to do an MLB. She hasn't had one in over a year. Well, I don't think this answer gets you anywhere, but here goes. Alex does have a suprastomal collapse. However, we do not see any vacuum at his stoma during a trach change. When the problem was at its worst, what we saw was Alex attempt to breathe and fail. It was like this. If he was exhaling, he would continue to do so, but when he inhaled, his trachea "slammed shut" basically. Then he looked like he was choking and he would turn bright colors. He would gasp and try to inhale repeatedly, and very little if any air would move. He would get the wide-eyed panicked look that so many of us know, but the stoma remained basically the same. If we left him without the trach long enough, he would begin to go pale, then grey, and then pass out for lack of oxygen -- less than three minutes.
(For those of you who are new -- don't call child services. We didn't and don't leave Alex's trach out. This was a hospital test in a controlled setting when it got so far that Alex went limp. At home he is never without his trach for more than a few moments while we change it.)

Susan -- hope that helps somewhat. I wonder if the difference might be a bit what Julie said -- whether the stoma has sufficient skin growth inside to hold it open? Maybe the vacuum is less about a collapse and more predictive of who might need a stoma revision in the future? (This is just a thought that occurred to me -- you know, if the stoma has integrity, it is more likely to have a skin growth so far down that it won't close on its own later? :confused: ) Just a thoughtl.

There is no doubt that Ainsley will need a stoma revision. I've had several doctors say so. But yes all that scarring does have some advantage in that I do not worry one bit about the hole closing and I can always get the trach in.

....I think there are also varying degrees of collapse. So, perhaps if there is some collapse there is a simple procedure to fix it........? I don't think it always entails a full LTP.

I hope you're right about that. I thought trachea collapse always meant LTP.

Suzanne, thanks for being the voice of reason. Of course you are right. You probably can't tell by looking. I suppose the stoma sucking in might just mean she isn't able to get enough air through her upper airway. Which would make sense if the swelling is still present. I've just been hoping that it isn't. Like you, I would prefer to see better results when the trach comes out. It doesn't bode well for an easy decann. But when have things ever been easy for us, eh?

It seems that whatever the reason, this isn't a great thing to see.

Thanks again.

[KJKK8437]

I had another thought -- I'm wondering if there is any connection between the vacuum effect some folks see and the floppiness of the airway, but not collapse. I mean, if there is congenital malacia or if there is just ordinary baby floppiness, there is a greater chance of what you are seeing? That might explain why it shows up then goes away, like Julie saw, and why it doesn't go away at the same rate. Stiffening of the airway, we were told, is a process that goes through age 5.

Anyway, I agree with Suzanne. But, if you are like me, you probably worry about what the vacuum is anyway. I love your "don't worry until you know" advice, but I have a dreadful time taking it. :o Maybe this gives you something less scary to think about.

[Ainsley's Mom]

I had another thought -- I'm wondering if there is any connection between the vacuum effect some folks see and the floppiness of the airway, but not collapse. I mean, if there is congenital malacia or if there is just ordinary baby floppiness, there is a greater chance of what you are seeing? That might explain why it shows up then goes away, like Julie saw, and why it doesn't go away at the same rate. Stiffening of the airway, we were told, is a process that goes through age 5.

Anyway, I agree with Suzanne. But, if you are like me, you probably worry about what the vacuum is anyway. I love your "don't worry until you know" advice, but I have a dreadful time taking it. :o Maybe this gives you something less scary to think about.

I have a dreadful time taking my own advice. Maybe it is malacia but I'm not sure if that is less scary. I'm TRYING to be patient but I'm so darn sick of this trach. I'd almost rather deal with something that can be fixed surgically than another thing we have to wait and wait and watch. With low muscle tone who knows how long it might take for her trachea to firm up. With all her other issues I an very concerned about the effect of the trach on her language skills. She's not able to sign and hasn't picked up on the PECS. But there is always the chance she just wouldn't be making many sounds anyway for neurological reasons. The little booger keeps taking off her PMVs. It's hard not to take it too seriously. What will be will be. I guess. At least she seems to take it all in stride and thankfully has an easy going demeanor so she doesn't get too frustrated with not being able to communicate. That would be hard.

[aydenava]

Ayden needed his LTp for this reason,The tracheomalacia cleared up,except the area where the trach was...Angie

[KJKK8437]

I'm TRYING to be patient but I'm so darn sick of this trach. I'd almost rather deal with something that can be fixed surgically than another thing we have to wait and wait and watch. With low muscle tone who knows how long it might take for her trachea to firm up.

Oh, I hear ya, sister. When I heard that they wanted us to "wait a year and see," my heart broke. I just wanted to mention, BTW, that we were told that low tone and airway floppiness are not related. I'm sure that they could be affected by the same underlying condition, but they are two separate things.

Here is to you getting a break on this wait and see. I think you need it.

[Ainsley's Mom]

Oh, I hear ya, sister. When I heard that they wanted us to "wait a year and see," my heart broke. I just wanted to mention, BTW, that we were told that low tone and airway floppiness are not related. I'm sure that they could be affected by the same underlying condition, but they are two separate things.

Here is to you getting a break on this wait and see. I think you need it.

You're probably right. But it's taking her so much longer to do everything else I just don't think I can expect that trachea to firm up ahead of schedule, KWIM? If they say 5 years it'll probably be 10, ya know? On a positive note when I put the PMV on her last night she did really well and even kept it on pretty happily. If she could wear it all day and make sound then I would feel so much better about the trach. But being essentially non-verbal for over 2 years when you have global delays and a cerebellum (brain) malformation anyway is scary. Who knows what effect that will have on her ability to process language. And I keep reading that the first 2 years are the most important in brain development. Great. Anyway. No sense worrying about it since it's beyond my control. Now if I can just find the rest of the PMVs darn it!