Has anyone capped at home?

[CathyC]

Hello,
I haven't posted too much lately, things have been pretty busy with my twins, who will be turning one next month! We went in to the hospital on Wednesday to have what I expected was yet another bronch with dilation, but got the shock of our lives. The doctor came out after the first twin's bronch and said her airway was very open and that they would try to cap then decannulate her. During the next twin's bronch they discovered a large piece of hard scar tissue and removed it. They said this twin's airway was also open enough to try to cap and decan. Unfortunately, the capping didn't go very well for either of them. The doctor believes it should work and it was decided that we would try to cap them at home.

Has anyone done this? I'm pretty scared. They don't have caps for the size trachs my girls are on, so we're taping up a HME. Does anyone have any advice for capping? One of my twins failed the capping because she panics. I think the other was having problems because her throat was sore from removing the scar tissue.

Any advice? Any idea how long it takes to build them up to the 24 hours they need to reach?

Thanks in advance,
Cathy

[JWorthington]

We taped up the pmv with Sam and it worked great. Sam was wearing the pmc 24/7 when we started. we were up to blocking off all waking hours when Sam was admitted for decann. They capped for 24 hours then took the trach out!
Good luck!!!!!

[drct1245]

We used PMVs first, therefore they can breath in, but can't breath out. For both cap and PMV, we started off very slow - literally a few minutes and played and cheered... reassure it's OK... also make sure they are well rested. I would probably just do 1 kid at a time. We didn't have to a full 24 hrs, but we got up to 12 hrs in about 4 weeks. I like taking a calendar and writing out the goals. Getting to the first hour, took the longest, probably about 5 days. (?)

I thought caps were 1 size fits all... I didn't think there were different sizes.

What size is your kids' trach? We ad to go down in size for Ayden to be comfortable w/ the PMV & cap. (FYI)

good luck!!! what a fantastic surprise!!!

[Big Al]

I have a client who is being capped he has been wearing the pmv 24/7 for a while now. They just sent home an order for capping as tolorated increase until capped for 24 hours a day. We were up to 14 hours a day and and four hours
At nite, before he got sick. I callled HMC and they even wanted him capped overnight so long as their was a nurse on. I've never heard of going right to capping always seen a pmv first. I think that going right to capping would be hard because they have never had to use their upper airways in any serious way so just baby steps to allow them to get use to the sensation and the increased work.

[Kaylie]

what size trachs are the twins? because i too have never heard that there is no cap to fit. i am sure u are right when you say the one twin couldnt tolerate the cap after the removal of the scar tissue,( it makes great sense) that will take time to heal as i am sure the airway is swollen and very irritated due to the removal and the bronch. some kids have swelling just after the bronch and cant tolorate. so i would hold off like u said with the one. as far as your other twin, sorry i dont know there names, you should start out slowly and definetly not do it yet while sleeping, that is something that will take time to work up too. when u first start it could only be seconds, or maybe minutes, but remember this is all new to them, and they actually have to breath like u and i and it will take sometime. i agree too with what Dawn has said, be tricky if u must. when we first started working with a cap we had the pulse ox on Kaylie to check for desats, nasal flaring, working harder to breath, heart rate and so forth,, as each doc have their own protocol, some start out with PMV, downsize the trach to a smaller size, and so forth then go to capping, but again everyone is different. there are even some children who cant tolorate the cap or pmv and they still get decanned so the range is is so different for everyone. if u want to still cap, take baby baby steps, several times a day, make it a game, have fun,, and see if each day u can increase. there are caps that from my understanding fit most trachs universally..check with your dme.maybe someone can show u a pic of one..

[Nate's Ma]

We weren't allowed to cap 24 hours until Nate passed his sleep study. Currently Nate is capped 24 hours since Friday. We downsized from a 4.0 peds to a 3.5 beds before starting capping.

[CathyC]

Thank you for all your responses. My girls had tried the PMV before we were to try capping at home. Courtney was on the valve for nine hours a day. Chloe didn't tolerate it at all. Since I last wrote, Chloe can stay on the PMV all day, no problems at all. We're going to try capping her today, I think. Courtney is capped during the day, but taking it off for her afternoon nap and usually a part of her morning bottle.

My question is, Courtney's breathing is heavy when she sleep with the cap on. I don't have an O2 monitor at home (they took it back quite a while ago), but I'm trying to get one to spot check. Insurance may prevent this from happening. Is this retracting normal? Her color looks fine, no duskiness. She also struggles with the bottle, but usually does better in the afternoon and evenings than first thing in the morning. Maybe she's not a morning person like her mom (lol). They spoon feed fine, it's just the bottle (suck, swallow and breathe problems).

Any helpful hints, or thoughts? I don't want to push Courtney too much but I do want to see her make progress. The doctors want to see us cap for 24 hours before they will schedule a decannulation.

[mylesmom]

We capped at home for all waking hours but not while sleeping, it never seemed to go well sleeping but that's another long story itself.

We had a proper cap for the trach. But also found that sticky pink tape covered the hme fine and worked as well.....it make take a while for them to get used to it so just start gradually............it is a whole new way of breathing and it is actually harder because the trach tube is actually occluding the airway a bit too............

great news for you! Good luck!

[mylesmom]

Thank you for all your responses. My girls had tried the PMV before we were to try capping at home. Courtney was on the valve for nine hours a day. Chloe didn't tolerate it at all. Since I last wrote, Chloe can stay on the PMV all day, no problems at all. We're going to try capping her today, I think. Courtney is capped during the day, but taking it off for her afternoon nap and usually a part of her morning bottle.

My question is, Courtney's breathing is heavy when she sleep with the cap on. I don't have an O2 monitor at home (they took it back quite a while ago), but I'm trying to get one to spot check. Insurance may prevent this from happening. Is this retracting normal? Her color looks fine, no duskiness. She also struggles with the bottle, but usually does better in the afternoon and evenings than first thing in the morning. Maybe she's not a morning person like her mom (lol). They spoon feed fine, it's just the bottle (suck, swallow and breathe problems).

Any helpful hints, or thoughts? I don't want to push Courtney too much but I do want to see her make progress. The doctors want to see us cap for 24 hours before they will schedule a decannulation.

That is exactly the problem with had with Myles when he fell asleep with the cap on........retracting, heavy laboured breathing........he would wake up in 10 minutes, he just couldn't do it..................

Long story short, he got his adenoids removed and that solved the problem...............you can PM me if you want or need more info.

His sats never dropped while sleeping but he worked really hard to keep them normal.................

I think if I were you I'd keep the cap off while she slept...

Good luck!

[JWorthington]

We were told it wasn't safe to cap at home when Sam was sleeping. if she is struggling with it, I would leave the cap off when she is sleeping and mention it to your ent at your next visit. It sounds like great progress is being made anyway, good luck!

[DadOf24Weeker]

We have orders to "PMV and cap as tolerated" at home. So far, Sahana hasn't tolerated the cap for more than 45 seconds. She handled the cap better than the PMV.

We're now trying with an HME that's taped over about 80% and she's tolerating that well. While sleeping, we have a mist collar around her trache, therefore no PMVs, caps or HMEs.

[Ainsley's Mom]

First I would try capping while awake and would NOT cap while sleeping until you've established successful capping during the day. Especially with no pulse-ox. I think it is like the PMV you work up to it. Start when they are distracted and happy. Go for increasing periods of time. Retracting? I don't think that's normal. Yes the cannula takes up some room but if the airway is large and open (the ENT should be able to tell) then the amount of the cannula shouldn't cause a problem. The caps are sized like PMVs. One size standard fits all. I believe 15mm. Good luck!

We have had a cap since Jan. But are still only able to wear it for a few hours at a time. Different airway situation though.

[CathyC]

My older twin is tolerating the cap during all waking hours now and even did well with her morning nap today (no retracting at all). The pulm. doc. told us not to cap at night, so we are holding off on that. We started our younger twin, who had been tolderating the valve all day, on the cap three days ago. She went 22 minutes the first day, 28 the second and one hour yesterday, so it looks like she's on her way. Hopefully she'll continue to improve like her sister. We have an appointment with the ENT and Pulm. in two weeks, so the hope is that they will make an appointment to cap my oldest at that point.

Thank you for all your help and support, hopefully we're on the road to decan.
CathyC

[karma]

Our Pulm asked us to go for sleep study for Arjun while he is capped.
He wears PMV for 4-5 hours each day.But moment we put CAP on he just stuggles and retracts.looks like he is not able to breathe.We remove the Cap immediately.
We have canceled the sleep study.
He wear 3.5 Trach.What should we do we are really discouraged and lost.

[Ainsley's Mom]

Our Pulm asked us to go for sleep study for Arjun while he is capped.
He wears PMV for 4-5 hours each day.But moment we put CAP on he just stuggles and retracts.looks like he is not able to breathe.We remove the Cap immediately.
We have canceled the sleep study.
He wear 3.5 Trach.What should we do we are really discouraged and lost.

Just because a child tolerates the PMV does not mean he can tolerate a cap. I think he is not ready yet, but will get there in time. Try not to be discouraged. I know how hard it can be to be patient. You did the right thing in postponing the sleep study. You can reschedule when he is able to tolerate the cap for longer periods. Try to put it on when he is distracted with an activity he really likes and see if the reaction is the same or better. We get the best capping from Ainsley when she is at school in the bath or pool (up to hours at a time) but if she is just sitting there she will demand we take it off right away.