Sleeping with PMV?

Caty · #1 04-27-2010, 04:34 PM

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.

Thanks!

lynn · #2 04-27-2010, 05:03 PM

When he is well, Joseph wears his all day-including naps(if he actually takes one

)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 · #3 04-27-2010, 05:04 PM

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 · #4 04-27-2010, 08:23 PM

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 · #5 04-27-2010, 09:37 PM

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 · #6 04-28-2010, 08:21 AM

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 · #7 04-28-2010, 09:57 AM

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 · #8 04-28-2010, 10:08 AM

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 · #9 04-28-2010, 10:58 AM

Quote:

Originally Posted by Jennifer

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 · #10 04-28-2010, 01:58 PM

Quote:

Originally Posted by 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.

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.