another PMV question

kadiera · #1 12-18-2009, 02:08 PM

so...I know it's more work to breathe with a PMV, but how much extra work are we talking here? Like major retractions? How much is too much?

The bronch says there's no reason to think Alexander can't be decannulated (good, because they didn't actually do one when they put the trach in!!!!). We know he has a huge air leak - enough to vocalize over the pressure of the vent.

lynn · #2 12-18-2009, 03:35 PM

When Joseph used the unmodified, he really didnt retract, he just really seemed uncomfy and screamed and cried the whole time it was on.
We started with three holes, worked down slowly to one, and then tried the unmodified.. he just seemed to dislike it so much, I switched back to one hole.
There shouldn't (in theory) be retractions, because with the pmv there is not a restriction on breathing in.. but they have to switch to nose and mouth to breathe out.. I did notice Joseph really mouth breathed because he seems to really dislike breathing from his nose..must be very uncomfortable, when he does start breathing thru the nose, there are MAJOR snotties that come out, so I am wondering if that is why he doesnt like it..I am wondering if if it feels kinda like when I have a sinus infection, and it hurts to breathe.

twintotwin · #3 12-18-2009, 04:01 PM

Hmmm...I don't have experience with the PMV on the vent but retractions do not sound right. Like Lynn said, he should be able to breathe in through the trach and out through his upper airway with the PMV.
How long are you keeping it on? And how long before retractions begin?

I'm surprised they're giving Alexander the PMV at this stage, a BPDer on the vent and so young. ??

MomofTwoBoys · #4 12-18-2009, 05:16 PM

The only time that we have seen alot of issues using the passy is when Hunter is stuffy, then he'll retract and everything. I think it has to do with air trapping and not being able to exhale fully then breathe in, but when his nose is clear he wears it all the time.

The retractions could be due to panic perhaps....different way of breathing could be stressing him...?

Kerry- Hunter is a severe BPDer, vent dep, and hx of pulmonary hypertension, and has been using the passy for about 6 months now (he's a year old adj)... I think it depends on the child. Our pulmonologist was amazed at how well/quickly he took to it, but he has no airway issues, just lung issues

kadiera · #5 12-18-2009, 07:47 PM

Well, since there are no airway issues - it's all lung issues, and since Alexander is off the vent all but 6 hours a day right now (and we're dropping by an hour twice a week - by mid-January we should be vent free), and since we know that with no ventilator and no O2, he sats ~95% (and 99-100 at 1 liter with a trach nose)......we're keeping our fingers crossed that by this time next year we will be trach free. And he's 18 months actual/15 months adjusted, so he's not as young as some.

With that all in mind, no one minded giving him a speaking valve, but the ENT is most used to dealing with the PMV, and we were having a hard time getting speech therapy set up without a valve at all. The new ST often uses another type of valve, and just doesn't like PMVs. So the plan is to follow his lead in what he tolerates.

The first couple of times, Alexander had no retractions at all over about 5 minutes. Last night, he was retracting within a minute, but acted like he was just fine - playing with his dad, smiling, etc. This afternoon, his primary nurse and I kept him distracted and playing, and about 8 minutes in he was getting a little worried, and he started coughing - and then he started retracting. Prior to that he showed no signs of distress, so we had decided to just see how he did. Taking the valve off resolved the retractions immediately.

You know, he does sound a bit....maybe not stuffy, but like his upper airway is irritated when he's got the valve on.

MomofTwoBoys · #6 12-18-2009, 08:26 PM

I hope the other valve works for you guys... in my experience, after not using the upper airway for so long, its more irritable and allergy prone (plus if he's teething at all it can cause some upper airway "congestion", we're going through that right now :P). I know the coughing can really irritate with the valve.... Good Luck

suzanne2545 · #7 12-18-2009, 10:52 PM

When Parker got a PMV they checked the pressure at Cincinnati. It was too high so they put some little holes in it to relieve the pressure.

I would think that retractions are not a good sign. Remember, a small airway, filled with a trach would be hard to pass air around.

JWorthington · #8 12-19-2009, 09:40 AM

Sam always retracted a little, but he that was normal for him. if he appears to be struggling then it doesn't sound right. have you tried monitoring with a pulse ox while he has the valve on? that's what we did with Sam initially and his sats dropped considerably and heart rate was through the roof, so we had to hold off for a while.

twintotwin · #9 12-19-2009, 10:34 AM

Right, I need to remember that all kids are different. The other babies were using a PMV before my boys were at the hospital now that I think about it. Elijah and Milo were still considered very, very sick up until they were 3. (they were hospitalized until age 2.5)
The doc was very conservative. But when we came home the ENT was even hesitant about using the PMV until she performed some scopes. Now the boys are completely fine with it on all day.

My guys are tummy-breathers so they appear to (sort of) retract all the time. If Alexander is still smiling could he really be in distress? Or could he be a tummy-breather? How are his sats and HR during that time?