What if she won't keep it on?

bryantem · #1 11-19-2009, 10:31 PM

So, I have been thinking about our upcoming bronch and possible capping when I was doing PMV trials with Addisyn. She won't even leave the PMV on anymore. As soon as I put it on, she takes it off and drops it behind her. She knows she breathes from her trach and doesn't like anything blocking it. I don't see how capping will work if she won't even wear a pmv for longer than a second. I think she could tolerate the PMV if she would just give it a try, but she hates it and would rather play with the box.

alizesmom · #2 11-20-2009, 07:41 AM

Could you somehow place a scarf or something similar over her trach when the cap is in place? Good luck and I hope we hear about a naked neck by next year!

Karen

JWorthington · #3 11-20-2009, 07:42 AM

It took Sam a long time to learn to tolerate the pmv. Have you tried taping it on? When Sam was decannulated we just taped up the pmv and he did fine. I don't know if this will be risky for Addisyn. Sam never attempted to take his trach out, so it wasn't an issue for us.

faywrayy · #4 11-20-2009, 08:09 AM

I can only speak from our own experience, but I feel like if the kid is really ready for capping, then they will barely notice the cap is on. If they are still using the trach as a primary (or only) source for breaths, then they will notice it and not tolerate it. Of course there is a learning curve and they really do have to figure out they have to breathe from their face now and it can take a bit.

Leading up to Kate's decann, she only wore the PMV grudgingly and only for 30 minutes a day. So when they told us they were going to cap her, I had this nagging fear like you, that she either wouldn't keep it on, or wouldn't tolerate it - but she did. She was only capped 12 hours prior to decann, but when they put the cap on her, she didn't even notice just continued to play.

Good luck!

bryantem · #5 11-20-2009, 08:19 AM

I think Addisyn would adjust to the PMV, if she didn't try to pull it off after a second, She will pull of the one with the hole, HME, if you occlude her trach with your finger, she will push your finger away. She really does not like breathing from her face, but she can do it. Feeding thinks its a matter of her learning how to breathe around the trach- instead she just holds her breath. Her ENT said she probably doesn't like the pressure or resistance. I am going to work with her more dilligently and possibly keep the one with the hole on as much as possible so she is used to something being there.

DadOf24Weeker · #6 11-20-2009, 10:46 AM

Sahana wouldn't tolerate a PMV but took to a cap relatively easily, with taped HME as an intermediate step. So, it may yet turn out to be not a big issue.

Ainsley's Mom · #7 11-20-2009, 11:41 AM

Quote:

Originally Posted by bryantem

I think Addisyn would adjust to the PMV, if she didn't try to pull it off after a second, She will pull of the one with the hole, HME, if you occlude her trach with your finger, she will push your finger away. She really does not like breathing from her face, but she can do it. Feeding thinks its a matter of her learning how to breathe around the trach- instead she just holds her breath. Her ENT said she probably doesn't like the pressure or resistance. I am going to work with her more dilligently and possibly keep the one with the hole on as much as possible so she is used to something being there.

I really think they have to "work up to it" and it's all about getting them used to the different feeling. I would try to put the PMV on her at times that you're right there and watching and when she is highly distracted with another activity (I know these scenarios can be hard to fine/create). The more hours a day you can get her to wear it the more used to the feeling she'll be and less likely to pull it off, and least that's my guess.

When Ainsley gets sick she can't wear the PMV. So we backslide a lot in the winter months. She might be able to wear it most of the day in the summer and only pull it off occasionally but if she's gone a period without it I have to basically start all over after with getting her used to it.

All that being said I think it's a common issue. I imagine it must be annoying to have to exhale out of a different place than you inhale. I've never heard of a kid who likes the PMV, mostly it seems the ones who tolerate it do so only after we parents push it.

I do think that if the airway is sufficient capping can be easier because the inhalation and exhalation are coming from the same place. I hope that's the case for Addison. Do you not have your own cap that you try out prior to the admission?

bryantem · #8 11-20-2009, 11:47 AM

no, I don't have a cap, but we have a pulmonology appt on Tuesday, so I will ask for a script then. I also think the size trach has a lot to do with it, however I don't want to keep pulling the 3.0 in and out.

Ainsley's Mom · #9 11-20-2009, 12:09 PM

Quote:

Originally Posted by bryantem

no, I don't have a cap, but we have a pulmonology appt on Tuesday, so I will ask for a script then. I also think the size trach has a lot to do with it, however I don't want to keep pulling the 3.0 in and out.

Ask if they have one they can give you. So you don't have to wait for it to ship. Our ENT gave us one at the appointment (I didn't have to ask.) In Ainsley's case going from a 3.5 to a 3.0 didn't make a huge difference. But probably in her case because she has narrowing of the airway due to the vocal cord scarring issue. At the ENT says it's not where the bottleneck is.

aydenava · #10 11-20-2009, 07:05 PM

Ayden never tollerated the PMV or the modified one,he needed to have a LTP,so capping was never an option for us....Angie