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Veteran
Posts: 213
Location: Abingdon, VA | Does anyone else's Child have a passy muir? I tried Zoe's for the first time today and I couldn't get her to stop crying, so she then started to cough and gag and turned a little blue on me. I know it will get easier for her with time, but I was wondering if anyone had suggestions to make it easier for her. |
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Elite Veteran
Posts: 795
 
Location: Levelland, Texas | Kenzie also has a passy-muir valve and absolutely HATES it. Kenzie turned blue the very first time we tried it on her as well. She now 2 months later only tolerates it for about 1-1 1/2 minutes tops. They say it is harder for them to breath with the passy-muir. We were told to just keep trying and trying and someday she will learn to tolerate it. I wish I had more info. to offer.
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Veteran
Posts: 213
Location: Abingdon, VA | UGH! Thanks Stacy |
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Extreme Veteran
Posts: 424
| Jenny,
I remember the PMV being a challenge for Caroline in the beginning. She basically had to reteach herself how to breathe. Our consistency paid off and she eventually tolerated it all day and went to being capped all day...and still is. She uses a thermovent at night. Anyway, we started doing it 30 seconds, 1 minute, etc., gradually increasing it as tolerated. We did find something to occupy her as our watching her drew more attention to it. She didn't focus so much on that specifically (hard not to when you're breathing) but would have her favorite toy or book to look at or play with. Also, we would try to pop it on and off while she was playing. Made it less of an event if she was laughing. Hope our tips help! Best of luck to you~
Shannon
Caroline's mom 7 yr arthrogryposis, Pierre Robin Syndrome, trach, G-button, neuromuscular scoliosis, kyphosis, VEPTR #263 SAT |
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Veteran
Posts: 213
Location: Abingdon, VA | Thanks so much Shannon! |
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Regular
Posts: 72
Location: Monroe City, MO | I have to agree with shannon. Distraction is a wonderful thing! We pretty much had to do the same thing, just keep with it. From the beginning we have called it her "talker" b/c only with it on could she make sounds. Now she wears it all day. Good luck. Mary |
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Expert
Posts: 1582
Location: Greenbush, Minnesota | Hello ~
We had difficulty when Emily started wearing it also. She was afraid of it and I'm sure because it does feel different to breath. Being persistant will pay off. Distraction works very well. I remember Emily pushing (or trying to run) with a little walking toy in front of her and she was laughing but when we put the passy on she realized that she could actually hear herself laughing out loud. She will get used to it!
Good luck ~
Janita |
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Extreme Veteran
Posts: 514
Location: Sterling, NY | For what it is worth, I recently saw 2 twin little girls, about 2 years old. I didn't realize kids could talk with vents but these 2 were gabbering away together and with everyone else... running down the halls at the same time. Very cute. It seems they have adjusted to their PVM very well, too. |
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Extreme Veteran
Posts: 424
| Janita,
Your post brought tears to my eyes. I cannot believe I had forgotten how wonderful it sounded to hear Caroline's first cry with her Passy valve. Wow, thanks for bringing back a memory.
Shannon |
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Veteran
Posts: 116
Location: Bellevue, Nebraska | I can't remember when Carly first got her passy. Maybe when she was 2. Now, that is all she wants. She has her trache so that we can suction her. She got it when she was 9 mths old due to numerous aspiration pneaumonias. It was one of the best decisions we ever made. Last summer we actually had her capped. That was befor we underwent respitatory distess down in San Antonio. We went there for our VEPTR eval. We were in ICU for 3 wks before they flew us home by air ambulance. Carly loves her passy though. There are times when she coughs and gags but it makes her cough stronger and we just talk her through it. She asks for it first thing in the morning and she seems to think that she can't talk without it. |
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Veteran
Posts: 213
Location: Abingdon, VA | Thanks Linda. I hope one day Zoe will tolerate hers that well. She is doing a little better since we switched to the Shiley trach. I think even though the cuff on the Bivona was deflated, it was still too big for her to move enough air around the trach. She still seems to have trouble getting the valve open though. I may try a nasal cannula on her just to make sure she is getting enough oxygen and then see how she does with it. |
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Veteran
Posts: 192
Location: Bloomington, IN | I do not know what a passy-muir is and am confused about it. Marlee has learned to force air around her trach and she "talks", this is because she has a leak and we do not inflat her cuff. Does the passy-muir do the same thing as a leak would? |
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Veteran
Posts: 213
Location: Abingdon, VA | Rachel, a passy-muir valve allows you to breathe in through the trach, but forces you to expell air around the trach and through the vocal cords, thus allowing you to talk. Zoe has always had a huge leak and we almost never inflated her cuff, but was still only able to make a few grunting noises around her trach (she could make a little more noise while she was on the vent) and has swallowing problems, so her speech therapist suggested the PMV to help with swallowing because it forces you to breathe more normally. |
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Veteran
Posts: 192
Location: Bloomington, IN | Thanks Jenny. That is very interesting. Marlee can make a lot of noises and even says "dada". She has only been doing this for the past couple months though. I wonder if something like this would help her. I love to hear her little voice.  |
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Passy-Muir
