Determining readiness for a PMV ...

DadOf24Weeker · #1 10-22-2008, 01:31 PM

Hello all,

Sahana's made some good progress on several fronts in the two months that she's been home. She's able to stay on room-air for about 20 hrs a day, requiring a whiff (0.1L or less) for an hour or so when she starts sleeping. She's spending more time off the vent than on it, and we may be ready to ditch the vent in a month.

Oral feeding continues to be a work-in-progress but thanks to the Mickey-button growth hasn't been hampered.

We've been thinking of a PMV for her. Old discussion threads on the topic have helped a lot but, perhaps due to my inability to "search" cleverly, I have a couple questions:

1. Is the PMV a topic for discussion with the ENT or the Pulm. or both? Who makes the call? I'm assuming the Pedi. will defer to the specialists.

Our Pulm. believes that babies with sub-glottic stenosis won't do well on PMVs and therefore he wouldn't recommend that we even give it a try (but he's willing to let us try it at home "if you insist ..."). Aside from my dislike for such "policy" statements about what Sahana will or will not be able to do, I don't believe he knows much about the mildness/severity of her stenosis. The ENT who performed her tracheotomy has always maintained that her stenosis was mild-to-moderate and that he expected her to not require additional intervention. Like everything else that requires learning and adjustment, I'd fully expect our first attempts at using the PMV to be unsuccessful and would look to a doctor to help "make it work" for us.

2. How is readiness for the PMV determined? We think she has a small leak around her 4.0 trach. What other signs of readiness would we look for?

Additionally,
3. For those in the Dallas-Ft. Worth area, any recommendations on ENTs in the metroplex who specialize in sub-glottic stenosis corrective surgery, should we need it down the road?

Thanks,
Harish

scm · #2 10-22-2008, 03:02 PM

Quote:

Originally Posted by DadOf24Weeker

Hello all,

Our Pulm. believes that babies with sub-glottic stenosis won't do well on PMVs and therefore he wouldn't recommend that we even give it a try (but he's willing to let us try it at home "if you insist ...").

2. How is readiness for the PMV determined? We think she has a small leak around her 4.0 trach. What other signs of readiness would we look for?

Thanks,
Harish

It is more an issue of safety than 'doing well' depending on the level of her stenosis. The PMV works by preventing the exhale through the trach and forcing the air through her chords to allow her to vocalize. If her airway is compromised by stenosis, or anything which may have developed since the last time she was bronched (acquired malasia, granuloma, swelling,e tc) She could go into distress.

Also, a 4.0 seems large in diameter for a PMV given that she does have some level of stenosis. The smaller the trach tube, the more space around it for the air to pass. In Max's case he really didn't tolerate the PMV until his trach was a 3.0. Is she making much noise around the trach now?

I'd probably consult w. ENT first, since they will be able to address those issues and get her to a point where the PMV is a go

They'd have the information you need to trial it safely.

Sahana sounds like she has made some great progress! Congratulations on that

Hope · #3 10-22-2008, 07:41 PM

I think whoever is your main trach doc (in our case it was the ENT) would probably make the call regarding PMV. I don't know much about PMV's, because similar to what you were told, Shelby's level of SGS -- grade 4 -- did not make her a candidate for a PMV in her ENT's opinion.

Hope

alizesmom · #4 10-22-2008, 10:40 PM

No advice but I'm glad to hear how well Sahana is doing.

Karen

DadOf24Weeker · #5 10-23-2008, 07:49 AM

Christina and Hope - Thank you for your advice. I've called Sahana's ENT. In the past, he's said that he'd rather wait for her get off the vent completely since she seems so close to doing so.

Karen - Thank you for your warm greetings. I've been a regular reader of your posts and Alize and Ciara's progress.

Thanks,
Harish

JWorthington · #6 10-23-2008, 07:53 AM

Harish

Sam's ent was the one who made the decision for Sam to try the pmv. I would definitely see what he says as he will know the extent of the stenosis. sam doesn't have stenosis, so this has never been an issue for him. Glad to hear sahana is doing well, that is wonderful news. best of luck.

Julie x

drct1245 · #7 10-24-2008, 01:03 AM

We mostly worked w/ the pulm and had only seen the ENT 1x in a year after discharge, but after talking w/ the ENT vs Pulm re: PMV, we found the ENT to be more helpful w/ guidance. Ayden didn't have any stenosis, but was on a vent and had a 4.5 ped shiley and it wasn't until we downsized to a 3.5 that he had enough clearance around his trach to tolerate a PMV for more than 5 minutes. Before that he would just "blow his gasket"

and the PMV would go flying - then it became a game.

Hope that helps a little...

DadOf24Weeker · #8 10-24-2008, 12:40 PM

Thanks Julie and Dawn for your replies.

I think the responses so far have reinforced our belief that

a. Sahana's leak around her 4.0 is probably not large enough to make it a tolerable experience for her, leave alone pleasant. It'll probably end up increasing her WoB.
b. To be successful, we'll probably have try downsizing, monitoring, etc., which won't happen unless the ENT and/or Pulm. take an active interest in it. I'm assuming the Pulm. will have an opinion on any talk of downsizing.
c. We know where our Pulm. stands on the PMV topic. Our ENT wants to see us only when she is completely off the vent (which hopefully, will happen in December). He'll bronch her then and we'll go from there.

Thanks,
Harish

mylesmom · #9 10-24-2008, 01:34 PM

Our son got his PMV when he was 13 months old. We went through our ENT. A SLP was the person we met with to discuss it's use and his tolerance of it.

He is now 15 months old. Tolerates it very well. He has a 3.0 Neo Trach........laryngomalacia which seems to be resolving.......

I'd talk to your ENT...........we're in Canada so i am not sure how different the process is there.

Good luck!

Baby1107 · #10 10-24-2008, 02:52 PM

Harish - It sounds like you have a plan of action. I would go with the ENT's suggestion of waiting until after the vent is no longer an issue. That is just weeks away...woohoo!! Like Dawn eventhough we saw our Pulmo VERY regularly and our ENT only occasionally (2X) after the trach was placed I found him & his staff to be much more knowledgeable and helpful with the PMV issue. I recently moved to LA from DFW so you can PM if you like for ENT/Pulmo referrals.