sleeping w/ a cap vs. sleeping w/ PMV

[kadiera]

Ok, we've run into something interesting, and I need to call the pulmo & ENT for a definitive answer, but I figured I'd ask you all first.

Alexander wears his speaking valve (a Shiley, not a PMV) all day without oxygen (except when sick, and even then he does just fine unless he gets too sick). He sats around 97 most of the time, and almost never goes below 95 - our current orders are 94%+

This last time he was sick, we tried using an HME without oxygen (he was coughing a lot and the speaking valve made it worse, but he was satting around 97 until the coughing fits started) and his sats hung out at 93-94 with the HME, even when he wasn't coughing, so the oxygen went back on.

We've been told not to let him sleep with the speaking valve on, and he still obviously needs oxygen when he's asleep...but that's with an HME, which we now know causes him to need more O2. Seeing as how he's a toddler, once in a while he unexpectedy falls asleep when we're not prepared, and we've been checking his sats when we get home and carry him to his room - his sats while sleeping, with a speaking valve and no oxygen, are still around 97.....he needs between 1/8 and 1/4 liter when asleep with an HME to maintain anything above 95.

So...


We know downsizing to a 3.5 made a big improvement in how much O2 he needed. We know they're going to want him to cap before they decannulate. I'm almost sure the difference we're seeing is peep related; as others have mentioned, it often seems BPD kids are rather sensitive about lung pressures.

But now I'm wondering why it's ok to work up to sleeping with a cap on when you're not supposed to sleep with a speaking valve on? Because I think he could go without oxygen while sleeping if he could use something other than an HME.

[JWorthington]

I think it depends what Alex's doctor is happy with. The only time Sam slept with a pmv/cap was when he was in hospital for trial decann. Sam was O2 free even with a hme at that point. my only concern would be that he would get too dry sleeping with the cap on and would he be able to cough up his secretions.

[Caty]

We went through this a couple of months ago. Nate sleeps great off the vent but won't sleep with a trach mask for humidity and hates HMEs. He doesn't dry out on the PMV and can control his own secretions well. When I started asking why he couldn't sleep on the PMV, basically everyone said they didn't know or because the literature accompanying the PMV says not to. I didn't think that was a good answer and wanted to know WHY. Finally Nate's SLPT called Passy-Muir for me and talked to a rep. The rep said she had 3 answers for me: one as a rep of the company, one as an RT and one as a mom.

Rep answer: No studies have been done for PMV use while sleeping. Passy-Muir does not recommend sleeping on the PMV

RT answer: As long as there are no lung issues, technically there should not be an issue. But again, no one really knows because no studies have been done.

Mom answer: I know my child, know when something's not right and should do what I'm comfortable with. She also suggested I check the forum on tracheostomy.com because "the parents there are so knowledgeable."

Our DME RT, who is pretty much the only person at the DME I trust and whom I respect greatly, talked with me further on how this applies to Nate. In his opinion the issue with sleeping with the PMV/cap would be build up of CO2. He thinks Nate has the capacity to take a deep breath while asleep but may not be able to exhale the entire breath because of his low muscle tone. My question then was, why are we working towards decan if that may be the case and he said we should err on the side of caution until that point or push comes to shove. The only issue Nate has seemed to have with CO2 was when he had RSV and was on the oscillator for a while. But we also don't have a way to check for CO2 at home and the RT really encouraged me to not take that chance.

So essentially, while the choice seems to be left to us as to whether we let him sleep with the PMV, I let the DME RT convince me it's not the best idea for Nate. That said, he's slept with the PMV several times (probably no more than 4 hours at a time) and hasn't had any issues. I think when Nate gets to the point that he can sleep off the vent the entire night, we may let him sleep with the PMV. Because if he's at the point of not needing the vent it means he's compensating enough for his muscles to not need the trach for exhale, IMHO of course.

Does that ramble help you in any way? I was really ticked that the go to answer is "no sleeping on the PMV" but NO ONE knows why. Honestly, if you're in a position (doctors, nurses, RTs) to advise someone on what to do with their child, shouldn't you know why you're giving the advice you're giving?!!

[Ainsley's Mom]

I think the biggest reason is their liability since the product was designed for day use. I think another consideration is that it takes a little more effort to breathe in one location and exhale through another. With a cap at least you are breathing in and out the same location. I feel like it's better to wear a PMV while awake when the brain is active because of the increased coordination it takes. That being said there have been times Ainsley has fallen asleep with the valve on. But I personally wouldn't do it regularly. Maybe my reasoning is faulty but that's how I feel about it. Now if I were in your shoes I too would really want to be able to use the valve or a cap if it meant not using oxygen. I'd inquire whether you could do a sleep study and check CO2 levels to see. Another thing to consider is whether it's time to start capping.

For us how it worked was. PMV use all day. Then cap as tolerated, building up to capping all day. Then cap during sleeping as tolerated (which she can do for about 1/2 and hour and then she starts to obstruct and wakes up so we have to take it off so she can sleep).

We recently wanted to be sure that Ainsley is really doing well enough with the cap so we could decide about moving toward capping while sleeping and her doctor did an electrolyte test. Apparently her levels would be off if there were long term CO2 retention. It was normal. A blood gas test would show the level, but just at that moment of the blood draw so he didn't do that.

[kadiera]

Originally Posted by Ainsley's Mom

Now if I were in your shoes I too would really want to be able to use the valve or a cap if it meant not using oxygen. I'd inquire whether you could do a sleep study and check CO2 levels to see. Another thing to consider is whether it's time to start capping.

Well, and that's the thing.

We only got a valve because we pushed for it so Alexander could go to speech therapy.

We were told the plan was no O2 during the day -> no O2 at night -> downsize -> valve all day -> downsize -> cap during the day -> cap overnight -> decan (2 nights in PICU, one capped, one trachless).

We pushed for the first downsize this summer for speech improvement since he was already wearing the valve all day and finally convinced the ENT to trial it. - and that got rid of our last 1/8L of O2 too.

I guess on the plus side....Alexander's next (and hopefully last) surgery is scheduled for Dec 2, and his next ENT and pulmo visits are both the 7th, so if we don't have a plan before then, I can at least be organized about how to approach this.

[Livi's_mama]

Not sure what to tell ya.

That's why Liv's "newfound" malacia doesn't make much sense to me.

She's on the PMV 24/7 and has been for about 2 yrs now.

She failed a sleep study 15 months ago, but I do think a lot of that was her being soooo uncomfortable with all that stuff on. She kept looking at me like what are you doing to me?!

[Linnae's Mom]

I have received the OK to use the PMV during sleep as long as someone is watching Linnae closely. One ENT seemed just fine with it and two other ENTs cautiously OK'ed use of PMV while sleeping for Linnae. Susan's arguments make the most sense to me as to why we should be very careful, but I think there may be situations where it would be fine.

[Melisande]

I agree with Susan about the liability issue. I would definitely check for the correct answer from the doc, but that order you listed is the "ideal" order and not all kids go in that order because every kid is different. JMO.

[Ainsley's Mom]

Originally Posted by kadiera

Well, and that's the thing.

We only got a valve because we pushed for it so Alexander could go to speech therapy.

We were told the plan was no O2 during the day -> no O2 at night -> downsize -> valve all day -> downsize -> cap during the day -> cap overnight -> decan (2 nights in PICU, one capped, one trachless).

We pushed for the first downsize this summer for speech improvement since he was already wearing the valve all day and finally convinced the ENT to trial it. - and that got rid of our last 1/8L of O2 too.

I guess on the plus side....Alexander's next (and hopefully last) surgery is scheduled for Dec 2, and his next ENT and pulmo visits are both the 7th, so if we don't have a plan before then, I can at least be organized about how to approach this.

I guess it was a stroke of good luck that they agreed to the PMV for speech therapy. Otherwise you wouldn't have known. If I were in your shoes I would ask about revising their plan/requirement of no O2 first before the next steps in light of this new information that he doesn't need the O2 if he has the valve on. I'd also ask whether that might indicate that they should try a cap at your next ENT appointment. If he is able to wear the PMV all day then at least you know he exhales fine. It would be nice to know if he could also inhale. I agree you need to know about CO2 retention.

Sounds like some good stuff going on, and December will be here before you know it.