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georgana
04-12-2009, 01:25 PM
Hi,

I was wondering if any of you have attempted home capping? I want to spare my son having to go under for another bronch and I figured a home capping trial would tell me if he was ready. My son is in a 4.0 Bivona and the ENT said to try a home capping trial with a 3.0 for up to an hour and then put the 4.0 back in. I have heard that some ENT's try gradually down sizing first and then try capping trials. Other times I heard that they just cap the 4.0 at first and see. This whole thing is so confusing. How are the kids supposed to prove that they can breathe properly when a trach tube is still in their airway. It just doesn't seem like a fair test. What has been your experience?

Georgana (Mom of Arturo former 24 weeker now 26 months old)
He has been off of oxygen for over a year now but had to have a sublgottic stenosis repair last August which has still left him with sublglottic edema.

mylesmom
04-12-2009, 04:17 PM
I know, I had the same type of questions. We noticed with capping our son (3.0 Neonatal) that he did awesome when awake but as soon as he fell asleep you could tell he struggled and had to WORK. His sats always stayed good but he had to work hard to keep them there while asleep.

We took him for his capping trial at the hospital fully expecting him to fail the sleeping portion. He didn't. They decannulated him the next day and still did fine. But, I felt he was working too hard all along. We brought him home and he started snoring and desatting...........

Brought him back to the hospital and after watching him (and seeing him desatt) they took out his adenoids.............he improved SO MUCH!

Anyway, that's our story..........you'll get the sense right away if he's working too hard. Trust your gut too.

They can get enough air around it but I know what you mean, they do have to work a bit more.............

georgana
04-12-2009, 07:17 PM
Hi Mylesmom,

Did your son get downsized from a 4.0 to a 3.0 or did he always have a 3.0 in? We tried out son out today. He was breathing fine with the Passy in a 3.0 but the moment we took off the passy and replaced it with a cap, he freaked out. So, I guess he is not ready. So disappointing.

KJKK8437
04-12-2009, 07:30 PM
Hi Mylesmom,

Did your son get downsized from a 4.0 to a 3.0 or did he always have a 3.0 in? We tried out son out today. He was breathing fine with the Passy in a 3.0 but the moment we took off the passy and replaced it with a cap, he freaked out. So, I guess he is not ready. So disappointing.

You didn't mention whether he could manage to breathe -- just that he freaked out. Did you get a chance to see, or was he too upset? Does your son have an airleak in his 4.0 at all so that he experiences any airflow in the upper airway?

Inhaling suddently without the trach for the first time in years can be painful in the sinuses, IMO. I had sinus surgery a few years ago, and it opened up a portion of my upper airway that had been blocked for many years -- possibly my entire life. When the air hit the tissues, it was like cold icewater dripping inside my head. It was awful. The only way past it was to just keep going until it got better.

Of course, you know your child best, and I am not questioning your judgment in the slightest. I just wanted to offer a reason why he might "freak out".

babyhugger
04-12-2009, 07:40 PM
We first did a 48 hour capping trial in the hospital and then a capped sleep study with a smaller trach in place, before capping at home. After he passed both, we capped for 3 months at home. He was then decanned in the hospital and observed for another 48 hours. I think our doc is conservative in his approach (Dr. Cotton in Cincinnati).

I hope you have a better outcome on your next trial.:)

mylesmom
04-12-2009, 07:44 PM
Hi Mylesmom,

Did your son get downsized from a 4.0 to a 3.0 or did he always have a 3.0 in? We tried out son out today. He was breathing fine with the Passy in a 3.0 but the moment we took off the passy and replaced it with a cap, he freaked out. So, I guess he is not ready. So disappointing.


Try again, Alex's mom has some good input. It is very strange for these kids to start breathing through places they have never breathed through before.

We have always had a neo 3.0, up until the day he was decannulated. He had a Passy Muir for a few months prior to capping and did fine with that.

I think if your son can handle the Passy Muir then he should tolerate the capping........

Slowly keep trying, don't be disappointed yet! It's hopeful he can tolerate the PMV.

georgana
04-14-2009, 02:52 PM
Yeah, he wears the Passy Muir during all awake hours without a problem. Yet when we capped him he became really agitated and his lips turned bluish so we knew it wasn't working. I guess we will have to have another bronch this summer to see what his airway looks like now. I just hope he hasn't re-stenosed and that it is just the unexplained edema which we are waiting to self resolve. It is so frustrating because the doctors cannot do anything about airway edema. They said it is just a waiting game for when he grows out of this condition. Thanks for the input though. I find this blog most helpful to me. It is wonderful to connect with other mothers in the same boat.

Georgana (mom of Arturo former 24 weeker now 26 months old, still trached for subglottic edema resulting form failed stenosis repair)

haltec
04-14-2009, 03:08 PM
We first did a 48 hour capping trial in the hospital and then a capped sleep study with a smaller trach in place, before capping at home. After he passed both, we capped for 3 months at home. He was then decanned in the hospital and observed for another 48 hours. I think our doc is conservative in his approach (Dr. Cotton in Cincinnati).

I hope you have a better outcome on your next trial.:)

We went through the same process as Dawna mentions, but with a fenestrated trach. Sienna couldn't get enough air around her trach (3.0 trachoe) so Dr Rutter (also in Cinci) fenestrated it. He didn't want to go to a 2.5. That worked well for us. It did take time for her to adjust. They wanted to cap 24/7 after the initial 48 hour trial in the hospital but she appeared to really struggle while sleeping. We worked up to 24/7 in about two weeks.

Ainsley's Mom
04-15-2009, 01:46 AM
We went through the same process as Dawna mentions, but with a fenestrated trach. Sienna couldn't get enough air around her trach (3.0 trachoe) so Dr Rutter (also in Cinci) fenestrated it. He didn't want to go to a 2.5. That worked well for us. It did take time for her to adjust. They wanted to cap 24/7 after the initial 48 hour trial in the hospital but she appeared to really struggle while sleeping. We worked up to 24/7 in about two weeks.

Please tell me MORE! How did Sienna do with a PMV prior to capping? Did she have any trouble with the fenestrated tube, in regard to secretions. I thought I'd heard they seldom use a fenestrated tube for kids due to the secretions. I've always wondered about trying one. And we are having somewhat limited success with capping. I sense she is not really able to get enough air even though she can sometimes wear the cap for an hour. Her sats are okay and she's not in true distress just isn't comfortable if that makes sense. Bless her little heart she is such a "good girl" she will keep the darn thing on until I tell her she can take it off. Then she does and gives big smiles. I would hope that if she was truly distressed she would just pull it off. Anyway, I'm just tired of waiting to get this trach out. They want her to be able to be capped all the time before attempting decan but it seems like that won't ever be possible. I feel like the tube is in the way even though the ENT says she "should" have enough room around it to breathe. Well, you know, it's still taking up 5.2 mm of her airway dude. And since when does "should" apply to my girl? So anyway.... if you can give a little more info about the fenestrated tube that would be great.

haltec
04-15-2009, 08:54 AM
Please tell me MORE! How did Sienna do with a PMV prior to capping? Did she have any trouble with the fenestrated tube, in regard to secretions. I thought I'd heard they seldom use a fenestrated tube for kids due to the secretions. I've always wondered about trying one. And we are having somewhat limited success with capping. I sense she is not really able to get enough air even though she can sometimes wear the cap for an hour. Her sats are okay and she's not in true distress just isn't comfortable if that makes sense. Bless her little heart she is such a "good girl" she will keep the darn thing on until I tell her she can take it off. Then she does and gives big smiles. I would hope that if she was truly distressed she would just pull it off. Anyway, I'm just tired of waiting to get this trach out. They want her to be able to be capped all the time before attempting decan but it seems like that won't ever be possible. I feel like the tube is in the way even though the ENT says she "should" have enough room around it to breathe. Well, you know, it's still taking up 5.2 mm of her airway dude. And since when does "should" apply to my girl? So anyway.... if you can give a little more info about the fenestrated tube that would be great.

Hi Susan.
I'm going to try to answer all of your questions, but feel free to PM me if I miss something. :)
Sienna was using the PMV all day prior to capping with no issues. When we went into clinic prior to our in-house capping trial, Dr Rutter tried the cap on her 3.0. She struggled with it. She started retracting right away. We didn't have a pulse ox on her, but I think her sats were fine - at least she didn't turn blue.:eek: (Before she was trached she had absolutely horrible retractions, but was always in the high 90's.) That is when he suggested a fenestrated trach. He said that they don't do them often, and they don't like to use them long term because they can cause granulation tissue where the hole is from rubbing. So we left clinic with a plan for a bronch and if all looked well, he was going to custom fenestrate her trach.
He 'designed' her trach while she was under. He wrote numbers on the cannula and placed the trach then used the camera down her nose to see where he needed to cut the hole so the edges didn't rub on her trachea.
We stayed at the hospital for 2 nights. She retracted with the cap while sleeping but the docs weren't that concerned. I on the other hand had a very difficult time with it. She passed the capping trial and they sent us home for 3 months. We were told to use it 24/7 and only take it off if absolutely necessary.
I couldn't do it. I ended up taking the cap off while she slept and slowly worked up to using it 24/7. I think she needed more time to get used to it. This worked for us and we still capped for over 2 months 24/7.
As far as secretions go, she obviously coughed up a lot more with the cap. She sounded 'junky' a lot and we had to tell her to cough most of the time. When the cap wasn't on, it was difficult to suction because the catheter would get stuck on the hole in the cannula and make it difficult to get past it.

What size trach is Ainsley using? Is there a reason they don't want to go smaller? In Sienna's case, they didn't want to go to a 2.5 because they clog easy because they are so tiny. That is so cute that she will keep it on until you tell her she can take it off. We had the 'new' tracoe trachs that were slightly bigger so the cap was difficult to take on and off - I think you had a difficult time taking the PMV off of them as well... When Sienna would try to take it off, she would decannulate herself. But I don't think she ever took it off due to distress, it was just a game to her.:hairpull:

Using the fenestrated trach is what got us decannulated - I don't think Sienna would have been able to handle having her 'regular' 3.0 capped. There just wasn't enough room for her to breath comfortably around it. I would definitely ask more about it.

Please let me know if you have any more questions. I hope this helped.

:hug: