Passey Muir ?
Well, it's June 10th and Lillie is about to go into her 25th surgery :( After this surgery her Dr. is going to try to put a passey muir valve on her which is exciting and scary at the same time. She's about to turn two in a few weeks and I have never heard her voice,but,at the same time I don't know anything about this valve except the info her Dr. gave me. Does anyone out there know anything about these valves and how good or bad they are? Concidering she's not ready for decannulation yet I'd love to be able to hear her voice...but I don't like going into something I know little about.Her Dr. says many children have trouble wearing this valve...what's the easiest way I can help my Lillie adjust to it without making it too hard on her or me? Drs. have tried many things with her like fiters and everything they have tried so far she doesn't do very well with and she's been through sop much already I hate to see her go through anymore.If anyone has experiance with a passey muir and would like to let me know about it I would greatly appreciate it.
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Clinton has VCP and he has
Clinton has VCP and he has used a valve since he was about 9 months old. When we started to use the valve we first changed his trach to a 2.5 Neo and we started with a Montgomery Valve. If you look it up on line you can see the difference in the Passey and the Montgomery. We started with Clint wearing it a few hours in the morning and again in the afternoon....once he was ok with that - we than tried it while he was sleeping. As soon as he got used to the Montgomery we upgraded to a Passey which he uses now 100% of the day! He will be 2/12 next week and has been using the passey since he was about 11 months old.
To put your mind at ease I would keep and eye on her stats and make sure that she is not struggling with the valve and dont get discouraged if she cant wear it for a long period of time in the beginning - it takes some getting used to. I know the post is a few days old and you probably already tried the passey - but if that doesnt work - maybe try the montgomery.
Good Luck!
PMV
Hi,
the PMV must be used while she is sitting up or standing. If she has subglottic stenosis, like my daughter, then it won't work for her. Either it will work for her and you will hear her voice, or it won't. The med staff will start her off slowly with it, like a half hour a time for 3 times a day or something like that.
I'm sorry to hear you guys are having so many problems. We are still on oxygen and sleeping on the vent at night and for naps, so we are a ways off from the decan process. Hopefully the day will come. You must be so frustrated, I can not imagine.
Brooklyn's Mom
Thank you for your
Thank you for your help...I'm not sure what her medical team is planning on doing yet I kind of just take things one day at a time...that's really all I can do. I just get a little frustrated with this I guess because it's more complicated than what I'm used to. My middle daughter has cerebral palsey...and that's really easy to deal with compaired to this. I guess I'll see how everything goes when she see her Dr. next week to talk about it. I hope everything works out with your baby and she can get off the vent soon. You and your family are in my thoughts and prayers!