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Old 03-30-2005, 04:33 PM
Karen S. Karen S. is offline
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I recently spoke to Hannah’s ENT doctor about capping her trach during the daytime. He recommended that we just use the PMV instead, especially since she is not talking yet. She does wear it for a few hours throughout the day, but then will start to throw it. I can’t tell you how many hours we have spent on a “PMV Hunt”.

Does anyone have any suggestions on keeping it on? One of my nurses thought that Passy Muir made some type of plastic piece that hooked the PMV to the trach ties so that even if pulled off, it would stay attached. Has anyone else heard of this?

Karen
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Old 03-30-2005, 04:51 PM
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Melisande Melisande is offline
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Karen,

Yes, we got something similar or exactly what you are talking about. We made the mistake of ordering it (I made the mistake, that is) as a clear PMV. The little plastic string that came with it was also clear. The PMV had a little eye on it and the plastic thing attached from the trach tie to the PMV. Of course, the first thing that happened was we lost our new PMV BECAUSE WE COULDN'T SEE IT!!! DUH!! Oh, well you live and learn!

The caps are much cheaper and easy to replace! It's like a little plasitc bottle cap without the threading on the inside. We got like 20 of them when they came and we have only used 2 so far! They are also bright red!!! We went ahead and tried the caps even though Dr. Molter said, "It doesn't mean you're going to get rid of the trach any sooner." - Again - DUH!! You and I know that getting rid of the trach has little if anything to do with why our kids have trachs in the first place!! It's primarily for ventilation access!

I'd be happy to give you one if you want to try it! Hannah is her own little person, isn't she! What would we do without them!
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Melisande H. Mother to The Preeminent Grand Poohba Donovan (5/27/03), still some "resolving" apnea, on the autism spectrum and some cerebellar malformations. Trached since he was 6 weeks old. Recently DECANNULATED 4/16/09!! Big brother to Conrad!

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Old 03-30-2005, 07:26 PM
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I think the plastic attachment is often thrown away because they are clear and small and there is so much other plastic and papers in the packaging. We love the attachment and Nate doesn't throw his off. It's just nice when suctioning, especially out in public because the pmv just dangles from his trach chain. We have had both clear and purple pmvs and yes the purple are easier to see, but at the moment, it's the one that is lost and all our clear ones are accounted for...go figure!
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~Marcie~Mom to Nate (8); trached at 5 wks due to chronic aspiration; CP, hypoglycemia (controlled with diet and meds), seizures, g-tube fed; Also mom to Brianna (16), Allison (14) and Delaney (3)

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Old 03-30-2005, 07:43 PM
Carriestockmal Carriestockmal is offline
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yes, they do make a piece like that. I think it comes in the kit, or you can buy it online.
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Old 03-31-2005, 03:00 PM
Karen S. Karen S. is offline
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Thanks alot for all the input. Since Hannah uses one of the older PMVs, we will have to order her a new one because the plastic attachment does not connect to the older valves. Can't wait to get it in and try it. From what you have all said, I will make sure not to order the clear one.

I also loved the idea of using security marker pens on the valve. Great idea.

Thanks again.

Karen
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Mom to Hannah, born 12/5/2000 with Congenital Central Hypoventilation Syndrome. Trached at 3 weeks, vented during asleep hours only (Since March 2004). Along with her brother, Justin, they are the joy of my life.
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