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Momoffive
06-04-2010, 02:22 PM
I am curious to know either your experiences or what you have heard, about the long term effect of having the trach on the trachea, when the reason for it was totally related to the lungs (i.e. no structural differences in the airway itself). Robin has had his trach for 11 years. Thanks!

Ann
06-04-2010, 02:28 PM
Jack has also had his trach for 11 years and for him, his airway above the trach is almost completely collapsed because of having the trach. Jack will never get his trach out, so it's not something I really worry about (although it does make me sad). There will always be the risk of damage to the trachea below the trach from the potential rubbing of the trach tube and/or from suctioning. Jack has a kink in his trachea caused by a vascular ring and during a bronch in 2005 it was discovered that the trach tube had eroded an area in his trachea near the kink. They ordered a longer trach tube to bypass this area and since then, he's had no problems. Jack is bronched every two years to check how his airway looks. I think regular bronchs are important for kids with trachs, even if they don't have lung issues.

aydenava
06-04-2010, 03:24 PM
Ayden was trached for pierre robin,tracheo,bronco,lyringeal malacia all that cleared up by age 3,but his trachea still collapsed just above & below the trach from the tube itself & he needed a single stage LTP to repair it..................Angie

nad_d
06-04-2010, 04:23 PM
i think when d collapse is above d stoma, to repair it is difficult.
maybe coz of this i cant put out my tube :(

Ainsley's Mom
06-04-2010, 05:24 PM
i think when d collapse is above d stoma, to repair it is difficult.
maybe coz of this i cant put out my tube :(

I don't know about that Nad. I get the impression that the trachea frequently collapses above the tube. A lot of the kids end up getting an LTP exactly for that reason. I don't know if it's different for adults.

Kate
06-04-2010, 06:07 PM
Like others-the collapsing due to having the trach. I have also seen Mitchell's swallow has gotten worse. (he has only had it 5 years) He never had problems up until about a year or so ago....he does best w/his speaking valve on and they feel that because of that, it is because of having the trach long term. Who knows though.

lynn
06-04-2010, 11:53 PM
Joseph has had his trach little over 3 years--- his is only for ventilation(lungs collapse w/o pressure)... he never showed a problem until his bronch 6 mos ago.. showed slight malacia... his most recent bronch last month- was a little bit worse- Docs keep telling me every year he has trach will add to the malacia, and he may end up with surgery to repair *if* we ever get to a point talking decan. *Joseph gets bronchs every 6 mos(just how his doc does it) so we will know well in advance if it gets bad enough before any decan attempts

nad_d
06-05-2010, 03:10 AM
from my study reading in internet that long term vent tube make malacia.
coz of this in hospital they try that i will fast not need vent, but no success.
the result is soften rings of my neack and stenosis.

when i change my tube, i feel great breathing from my stoma.

Alethia
06-05-2010, 04:39 AM
As far as I know, Angus doesn't have any airway issues or malacia now. His MLB results have always come back excellent with no stenosis, no scar tissue, no airway irritation. It is a bit depressing to read about the weakening of the trachea above or below the trach and the necessity for further surgery in order to repair it. I suppose it shouldn't come as any surprise to me. Thanks for starting this thread and preparing me for some unpleasant possibilities that I hadn't considered in future - I'd rather go into it with my eyes open IF he ever gets off the vent anyway. :hug:

Momoffive
06-07-2010, 09:35 AM
Thanks for all of the input. I must have had a moment there when I first posted as Robin has actually had his trach for 12 years :) I asked this question because none of the Respirologists here have ever mentioned the possibiltiy of any collapse etc.but from what I have been reading, it seems like a real possibility. Being somewhat Type A when it comes to our medical issues, I think I will talk to the current doc. about this. For the last few years, Robin has had an annual bronch but she goes in through the trach tube and down (always looks good) - would they even know what is happening above the tube from this procedure?

Ann
06-07-2010, 10:21 AM
For the last few years, Robin has had an annual bronch but she goes in through the trach tube and down (always looks good) - would they even know what is happening above the tube from this procedure?

I don't think so. In addition to the bronch to see the lower airway, Jack's ENT puts a (flexible) scope down his nose into his airway to see what is above the trach.

Alethia
06-07-2010, 05:03 PM
They definitely haven't done a nasal scope with Angus in the last few years. I'll quiz them about it and see if they can have a look while he's getting his surgery in July.

rosi's mom
06-08-2010, 08:32 AM
Rosi's problem from the trach was not collapse, but granulation tissue growing inside the trach. That means an extra surgery for Rosi next month. The ENT says this is caused by the body trying to get rid of the foreign material of the trach.

Madeline and Molly's Mom
06-08-2010, 10:15 AM
We're sort of experiencing this over here too... Madeline has had her trach only since July 2009 and it was because of lung/BPD/pulmonary hypertension issues. She is now off the vent 24/7 and we were getting excited to start the speaking valve, but the hospital says her pressures are too high when using the menometer... which could signal an airway issue... ugh! We're currently trying to get a bronch scheduled and I'm so nervous. I'm really hoping that maybe it was either a malfunction of the manchine (one can hope!) :) or maybe its granulation tissue inside the trachea as well as she's been pretty prine to it outside the stoma. I guess we'll wait and see but in the meantime I'm dying to hear my baby babble! She does seem to get a breath or two through her nose/mouth evey once in awhile, especially when I'm suctioning. I'm thinking that may be a good sign?

rosi's mom
06-08-2010, 06:21 PM
Rosi could even use the PMV before, but the ENT said he doesn't see how. So we've stopped using it. He showed us a picture of the granulomas and they block all but a very small section of her trachea. Poor girl. They'll all be gone soon enough here.