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| Pediatric Tracheostomies For parents and caregivers of children with tracheostomies. Please limit discussion to seeking and sharing of information pertaining to tracheostomy care, medical issues, special needs, disabilities, networking and moral support. |
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#1
03-06-2005, 01:55 PM
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Our 10-month old daughter has had a Passy-Muir valve for about a month and a half. She used to be able to tolerate it for up to 10 minutes, but in the last few weeks she can't wear it for more than about 30 seconds. Every time we put it on, she begins to cough violently and usually blows the valve off, or else she grabs it and removes it herself.
Any advice would be appreciated? 
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#2
03-07-2005, 08:18 AM
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I agree it depends on the child. The only advice I can offer to try to keep it on is to use the Secure-it piece that comes with the PMV. I know this won't keep her from taking it off of her trach, but she won't be able to throw it or lose it. Good luck!
__________________
Amanda,Mom to Jacob, greatest kid in the world. X-Linked Myotubular Myopathy, trach, vent, g-tube. 
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#3
03-07-2005, 08:35 AM
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Just keep working with it. Our son is 27 months old and still can't tolerate it for very long. He prefers to plug his trach with his finger and vocalize. It gives him more control. Our doctors said to keep trying the PMV, but said that some kids just never tolerate it at all.
__________________
Jakob, born Dec 02, Pfeiffer Syndrome, trached at 5 wks age due to mid-face hypoplasia, cranial vaultx2, monobloc, mid-face distraction, g-tube, pyloric stenosis, nissen, nasal stents, VP shunt, tonsils, adenoids, uvula all removed, tongue suspension, future pilot!!
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