Sleeping with PMV?

[Caty]

Nate was doing well off the vent during naps before he got sick and we just now got back to trying naps without it. Before the sickness, I let him fall asleep on the vent and changed him to the trach collar after he was asleep. Now, he wants to fall asleep off the vent but doesn't want anything to do with the trach collar, waking up if I try to put it on him.

Yesterday and today I let him sleep with his PMV and he did great with sats and HR; I haven't noticed him being extra dry or anything. When we got the PMV they warned us to not let him sleep in it. The only problem he's ever had with humidity has been drying out when we forgot to turn the heater on while he was on the vent. Awake, he's pretty normal as long as he uses the PMV.

What do I do? What damage am I causing by letting him sleep with the PMV? He doesn't like HMEs and I really don't feel like fighting him on this as we're starting potty training and I do not have the will for another battle. I will fight him if I must but I need some backup info for myself or I will keep letting him sleep in the PMV because it's the easiest way. :o

Thanks!

[lynn]

When he is well, Joseph wears his all day-including naps(if he actually takes one:rolleyes:)The only time we take the PMV off is for night time venting. He also hates an HME and will spend more time crying over it and then throwing it than it is worth it to me. I have asked our pulmo and was given the ok for napping as long as he doesnt seem to be struggling and is able to hold sats ok. When he wears his PMV all day, we have no problems with drying out.. only when I forget to put it back on him after suctioning.

Joseph doesnt have any lung issues; only trached for venting purposes- not sure if Nate has lung issues or not. I guess that would make a difference.

[bryantem]

We were told not to let Addy sleep with the PMV because if she were not to exhale effectively, she could build up too much CO2 and the pulse-ox won't be able to tell you if the CO2 is high. Addy is a respiratory baby, so her lungs aren't as healthy as they should be.

[kadiera]

We were told not to let Alexander sleep with the PMV (though of course, he sometimes gets part of his nap that way for various reasons). I know that the ENT is thus far not willing to downsize, so I suspect in our case it has to do with the size of his leak being marginal - and Alexander's issues are all lung related.

[Jennifer]

We have used the PMV for 2-3 hour napping for 2 years now. My son's sats are great @ 98 with HR 70's. He doesn't struggle or have any problems with the PMV in place. We always use the pulse ox for naps. Works great for him. I love the PMV. Such a fantastic device created by David Muir who has since passed. If you are unsure, talk to the makers. There should be a number on the booklet. They have trained clinicians that are quite helpful. I know the booklet says something about not sleeping with it in place but I think it is for another reason such as if you weren't being monitored. Our doctors @ two different hospitals okayed it. I believe you would see low sats & a change in a child's breathing with increased CO2. Really the makers could answer these questions. Great invention which frees our kids from the vent.

[JWorthington]

We were told no and Sam only really slept wearing a pmv just before he was decanned (though obviously Sam is older and doesn't nap) Sam also has heart and lung issues so that's probably why it wasn't recommended for us

[jamie]

Now I have to wonder if CO2 levels are a concern when sleeping with a cap?
I have let Evan take naps with his trach capped but now thinking twice about it.

[Linnae's Mom]

My daughter's ENT has given the OK for using the PMV while sleeping. She is hooked up to the sat monitor the whole time. We also watch to make sure her respiratory rate doesn't increase. I think the sleep warning is more for children that aren't hooked up to a monitor.

[kadiera]

I believe you would see low sats & a change in a child's breathing with increased CO2.

I wouldn't count on it - the event that tripped us over into Alexander having a trach was that he had a "textbook normal" blood gas one week at 1.5 liters through a nasal cannula, and an off the charts high CO2 the next week (over 100) at 1.0 liters, with no noticable symptoms.

[MegansMom]

Nate was doing well off the vent during naps before he got sick and we just now got back to trying naps without it. Before the sickness, I let him fall asleep on the vent and changed him to the trach collar after he was asleep. Now, he wants to fall asleep off the vent but doesn't want anything to do with the trach collar, waking up if I try to put it on him.

Yesterday and today I let him sleep with his PMV and he did great with sats and HR; I haven't noticed him being extra dry or anything. When we got the PMV they warned us to not let him sleep in it. The only problem he's ever had with humidity has been drying out when we forgot to turn the heater on while he was on the vent. Awake, he's pretty normal as long as he uses the PMV.

What do I do? What damage am I causing by letting him sleep with the PMV? He doesn't like HMEs and I really don't feel like fighting him on this as we're starting potty training and I do not have the will for another battle. I will fight him if I must but I need some backup info for myself or I will keep letting him sleep in the PMV because it's the easiest way. :o

Thanks!
.
My ENT told us to go ahead and let Meg sleep with the PMV - it was good for her and she did great with it on. This was against what the pulmo and speech therapist said also, but she did better with it too.

[bryantem]

Now I have to wonder if CO2 levels are a concern when sleeping with a cap?
I have let Evan take naps with his trach capped but now thinking twice about it.

A cap is a little bit different because he inhales and exhales the same way. Sometimes with the PMV, when they inhale through the PMV, they are not as effectively able to exhale the same volume. Does that make sense?

[Caty]

Thanks everyone. I thought humidity would be the problem so I'm glad you all know your stuff. :p He did have a problem with CO2, once upon a time. He was intubated, pretrach, so I don't know that would be an issue now. No lung issues, just muscles so maybe we're good but I'll still call his pulm. I was hoping to avoid having to come clean to the them about this but I guess it's inevitable. :rolleyes:

[Tiggerifficfun]

Clinton wears his PMV 100% of the time (except when taking a bath) and we have never had any problems with his PulsOx readings. Clinton was always irritated by his secretions and when we found out there was a valve that would let him swallow as anyone else would we were very quick to use it frequently. We started out with a Montgomery valve which is similar to a PMV. Once we knew he could handle that we swithced to the PMV and gradually increased his time with the PMV while he was awake and once he was fine with it while awake we tried it while he napped. Now - he wears it all day and night without any trouble. It all depends on the child and the reason for the trach. Clinton has VCP and has never been on a vent or needed oxygen. He never needs to have his mist collar on because the PMV helps provide him with 'natural' moisture. Its all a matter of trying it and seeing what your child can handle. I read the manual that came with the PMV and it states in there not to use it while sleeping but I think thats all a matter of precaution and releasing them of any liablilty. Its your call I dont think that it can cause any harm and could only help with your childs development.

[Livi's_mama]

Olivia has been on the PMV 24/7 for going on 2 yrs.

We have specific orders at the hospital for the RTs since they just want to fight us and pop her on an HME.

[karma]

Won't moisture be an issue for 24 PMV use as Child lungs will be more dry due to that.Would it impact lung growth in anyway...

[Livi's_mama]

Won't moisture be an issue for 24 PMV use as Child lungs will be more dry due to that.Would it impact lung growth in anyway...


Not in our case. Olivia's lungs actually look better and having the positive pressure of the PMV is good for her. With an HME you lose some of that peep.

Olivia is plenty "moist" and can have beads in the PMV. In the summer she can be drier but we just use a little saline if she gets pluggy. (she has a great cough)