Capping/trach weaning

[KJKK8437]

Does anyone have any experience with a "one-stage" nonsurgical decannulation? As I understand it, this is a decann without downsize and without capping. They just scope, and "pop it out." It was described in the report of the thoracic society as a preferred method, but I haven't found anyone but Alex that is facing this procedure.

I know why they want to do it this way and why they think it is best for Alex, but it is nervewracking because I have no real sense of whether Alex is ready. Sometimes he handles his trach changes well, and other times he panics and holds his breath. At all times, though, he NOTICES when the trach is missing, and he is afraid. He can handle a PMV fairly well a few times a day for long stretches, but not continuously because it exhausts him. Oddly enough, he doesn't seem to be able to exhale if his trach is occluded with a finger, but I'm afraid to push that too far and see if he "figures it out" like he eventually does with the PMV.

DH and I were so excited when the docs suggested this method, because we thought it would save months of downsizing and capping. It made perfect sense, because Alex's condition is all or nothing. Either the blockage is gone ... or it isn't. (Assuming no new conditions have come about.) Now, though, we aren't sure if it is normal for Alex to appear to struggle like this. Maybe it is just the shock of the air in the upper airway making him hold his breath, but I just don't know. When I had surgery to open up my sinus that was closed since birth, the shock of the air hitting the membranes HURT. Can that be part of it? :confused:

DH and I are about at our limits with fear and doubt. We want to trust the docs, but this process seems so much more uncertain then what we know others have been through. More importantly, we want to submerge our anxiety so Alex doesn't pick up on it, and we're finding that really hard to do. :help:

[cariaad]

Allison has been decanned this way 4 times. Unfortunately for her, she can't maintain the small airway she has open while she sleeps. Long story, but she isnt considered a good surgical candidate so we will be keeping the trach. It was nervewracking for us each time, but Allison didnt seem to notice anything different! Deb

[LittleBee]

I understand how you feel. Luke has his trach because his nose is blocked, and once that is completely open and stable, he should have no other obstacles to breathing on his own. We were not given the option of the quick decannulation though. Luke will get a PMV when his nose repair is complete and once he gets used to that he will get a cap. When he is wearing that for long periods then they will do a 24-48 hour capping trial in the hospital. Then if that is successful they will take out the trach.

Luke's nose is open now, but he has check-ups and dilations every month or two to get it as open as it needs to be. We were also told to put a finger over the trach occasionally and see how Luke does. Sometimes he does pretty well for about 30 sec to a minute then other times he panics and doesn't breathe.

I don't have any advice, but just wanted you to know you aren't alone!

Take care & good luck!

[drct1245]

Karin,
The plan for us is to do the PMV and capping prior to decan. Ayden's issue is his lungs, no structural issues.
good luck!!

[faywrayy]

I can totally understand your anxiety. While I'd love it if this were possible for Kate, there is something oddly comforting about a surgical decannulation...we're in a hospital, with a doc doing scopes all the time, then capping, etc., so we'll know. What Alex is facing is so uncertain. I mean yes, his tongue should be out of the way now...but yea, what if it isn't? The decann will be in the hospital, so they'll keep him there until they are certain he's ok.

Release the stress here. The go to the hospital with positive thoughts!

[Jack'smom]

I was told by our hospital that this is the preferred method - and I also read that same report. Our ENT says if a kid is ready downsizing and capping etc is just not necessary. Jackson started using his cap prior to palate repair because docs don't like to decann before repair as I am sure you are aware. So he is already capping and it is too late for the all or nothing route. But he will go in for a sleep study soon and then decan right away - without downsizing, night capping etc. Your son's path is nerve wracking, but they will not let him leave the hospital until they are sure he is doing great, so I say go for it!!!!

[Kaylie]

HI,
Were do you go for care in VA? Maybe you can get another opinion if you do not feel good about it. although i have read the same as what you said. Its great if thats what will best, no operation just taking it out.We live in Va also , we go to MCV or VCU in Richmond. I assume you go somewhere in Fairfax? What is your Doctors name? I know there is a Doctor who trained under Dr, Cotton who works out in Fairfax, his name is Dr ZAL ZAL, although we personally havent gone to him, i have thought about it. My grandaughter was suppose to get decanned last year and we asked for a sleep study while capped and after the results, she did not get decanned, we are suppose to try this year again, but im not so sure about it, although there are many different diagnosis for the kids, i am not sure what your littles is. I could give you info as to were we go, and i can also find the info about Dr. Zalzal if you want me too.

[Hope]

Hmmm... I think IF it's done in the hospital and IF you trust your doc and IF you've read about it and it's a legitimate procedure for your son, then I know this is much easier said than done -- you should go with it and TRY not to worry. I think as much as it's done for obvious reasons for most children, capping gives the parents time to TRUST that the child will be ok with breathing through the nose. In this way it's a transitional thing for both parent and child. But if your son doesn't need it -- like you said, he's either open or not -- then he just doesn't need it (but maybe you do!!!)

I think you're worried that most of us went a different route, and I would be a little freaked out about that too. Have you talked to the doctor about your concerns?

Hope

[KJKK8437]

I think you're worried that most of us went a different route, and I would be a little freaked out about that too. Have you talked to the doctor about your concerns?

Hope

I think I'm a little bass-ackwards. I'm worried that he really is fine, but he will freak out and panic or gasp for air (all of which he does from time to time on the PMV or during a trach change), and then they won't let him keep trying. He hesitates during the PMV, as if holding his breath, and hoping that we will just take it off. (Or, I think he's learned that if he waits and "pushes" that he can "blow" the PMV off sometimes.) Alternatively, what if he coughs up a lot of mucus and gags himself like he does sometimes? Will they send us home then?

Oddly enough, I'm not worried about Alex's safety. These docs have a reputation of "wanting to keep kids trached until they are 21." I think I'm worried that they will be TOO conservative and not give him a chance to get used to the shock. And, to be fair, I'm worried about how a failure will affect DH and me.

Does this make sense? Alex had a rough time with multiple surgeries and intubation while the trach was in place, and, of course, we are worried about what the bronch will show, so it all is kinda weighing us down.

I haven't had a chance to talk to the doctor. Ok, that's not true. I've tried to talk to him, and he seemed to understand, but he's never seen Alex on the PMV. Neither of his docs (pulm or ENT) seemed to see a need to. They just care that the 02 levels are fine. They understand he has to work hard, but they think it is because he has a big trach for such a little boy. We *think* we told them that he holds his breath (and I WILL tell them again), but at this point it is getting hard to remember.

At the end of the day, my biggest source of anxiety is something that many of you have repeated in your posts ... that prior to decann, your kids didn't seem to notice if the trach was out or capped. Alex does notice, and I'm wondering if that is a bad sign, or just, as discussed in the other thread on night capping, that he just needs to get used to it.

I know you guys probably don't have any answers, and this is something we just have to do for so many reasons. In the end, downsizing and a cap may never be a great answer for us, and I agree with the docs about this. I guess we just have to get ourselves in the right frame of mind, because we really can't know. So please keep us in your prayers and good thoughts. 36 hours to go.

[mylesmom]

We are going to the hospital on the 16th for the very same thing! They will have Myles in the OR, do the bronch and decide whether his airway is stable enough to decann. He has no underlying issues at the moment that should stop a decann. However, the doctor said that if there is any collapse around the stoma or significant scar tissue it won't happen on that day. But, if everything looks good they will take it out then and there and keep him in for observation.

At the moment he as a neo 3.0 trach, the same size he's had since 4 weeks of age, right now he's 9 months old. He is moving air past it all the time and is making tons of noise. He has the trach from an emergency situation when his airway swelled from laryngomalacia surgery (two days later)............

Funny, I am comfortable with the idea of them taking it out then and there and am not worried..........I guess because he doesn't require the trach for other underlying reasons.....I trust the doctor enough that if he says his airway is stable then I'll believe it. I would think we would be aware of any problems right away.

It's a huge worry all of this trach and airway stuff...........it's not as if you can just pop a pill and make the problems go away................it is constant and unrelenting. People ask how we do it. I usually say it's not so bad in the sense of the workload. It's the CONSTANT little things that get to you.......it's the worry and the moments you're not expecting that set you off (vomiting, suctioning needed when you're on a busy road and can't pull over.....on and on......)

All the best to you!

[mylesmom]

I think I'm a little bass-ackwards. I'm worried that he really is fine, but he will freak out and panic or gasp for air (all of which he does from time to time on the PMV or during a trach change), and then they won't let him keep trying. He hesitates during the PMV, as if holding his breath, and hoping that we will just take it off. (Or, I think he's learned that if he waits and "pushes" that he can "blow" the PMV off sometimes.) Alternatively, what if he coughs up a lot of mucus and gags himself like he does sometimes? Will they send us home then?

Oddly enough, I'm not worried about Alex's safety. These docs have a reputation of "wanting to keep kids trached until they are 21." I think I'm worried that they will be TOO conservative and not give him a chance to get used to the shock. And, to be fair, I'm worried about how a failure will affect DH and me.

Does this make sense? Alex had a rough time with multiple surgeries and intubation while the trach was in place, and, of course, we are worried about what the bronch will show, so it all is kinda weighing us down.

I haven't had a chance to talk to the doctor. Ok, that's not true. I've tried to talk to him, and he seemed to understand, but he's never seen Alex on the PMV. Neither of his docs (pulm or ENT) seemed to see a need to. They just care that the 02 levels are fine. They understand he has to work hard, but they think it is because he has a big trach for such a little boy. We *think* we told them that he holds his breath (and I WILL tell them again), but at this point it is getting hard to remember.

At the end of the day, my biggest source of anxiety is something that many of you have repeated in your posts ... that prior to decann, your kids didn't seem to notice if the trach was out or capped. Alex does notice, and I'm wondering if that is a bad sign, or just, as discussed in the other thread on night capping, that he just needs to get used to it.

I know you guys probably don't have any answers, and this is something we just have to do for so many reasons. In the end, downsizing and a cap may never be a great answer for us, and I agree with the docs about this. I guess we just have to get ourselves in the right frame of mind, because we really can't know. So please keep us in your prayers and good thoughts. 36 hours to go.


I worry about ALL the things you just mentioned. We are in the same boat, lucky you, only 36 hours.....we've got 10 days!......It's nervewracking................I try and keep busy and not think about it.

It is interesting how may different experiences I have read about on this board. Myles has never been capped or anything either..........he will go in the OR and hopefully, come out without the trach.........I worry too that it may be a struggle for him to breath, or that the bronch will make his airway swell and they will put the trach back in.............all these little worries plague me all the time. I truly hope it goes well for you, it will give ME hope!

[KJKK8437]

there is something oddly comforting about a surgical decannulation.

I'm glad you said it. I was thinking that myself, and then I thought, oh no, what kind of mother thinks that! :eek: But if I'm not the only one, then I must not be crazy. (Or, rather, this just isn't evidence of it!) :whew:

[KJKK8437]

HI, Were do you go for care in VA? Maybe you can get another opinion if you do not feel good about it. although i have read the same as what you said. Its great if thats what will best, no operation just taking it out.We live in Va also , we go to MCV or VCU in Richmond. I assume you go somewhere in Fairfax? What is your Doctors name?

We see Dr. Kapoor at the Pediatric Lung Center (Pulm -- known in the med profession as "Dr Clayton's group") and Dr. Bahadori (pediatric ENT). They are near Fairfax hospital, but they aren't in Fairfax (and neither is Fairfax hospital, oddly enough). I think the address for the PLC is Merrifield, and I'm not sure what town Bahadori is technically in, but it might be Falls Church or Merrifield.

[bamamom28]

My daughter was decannulated that way a few weeks ago. I was worried before the scope but they kept her overnight, and she did great. Feel free to pm me if you want to know more about it.