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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
04-23-2002, 11:01 AM
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Parker had his scope today and well.....he was not decannulated. We are home and well kind of in a daze. they have now said that Parker's cords are not moving much at all. In October it was said that one was moving almost 100% and the other was moving just not correctly. Now just 6 months later no movement at all. Two different doc's opinions I guess. I can appreciate the recent posts about diagnosis. What exactly is the good of a diagnosis if it's ever changing.?!?!?!?
I'm really frustrated. He's wearing his valve all day, except for sleeping and takes his trach out frequently and does ok. Shouldn't that mean the cords are moving? Maybe that just means he has enough room around the trach to tolerate the valve, and nothing has changed from the beginning with the cords. I think I'm gonna call for a consult with ENT and PUlmonology and get my thoughts together and figure out what next. They say wait....I hate waiting....especially with no plan!!! Sorry to vent, Just tired and frustrated. OH did I mention he pulled out his IV and there was blood everywhere, including all over mommy. They to Daddy where he puked all over him. Nice car ride home I might add. LOL! Cory P's always loving MOM 
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Parker, 3 Yrs. old., trached at 3 months (Nov. 2000) due to VC paralysis/paresis, DECANNULATED 9/5/03. A great litle guy who loves Hulk, Spiderman and is mommy's true love !!!!! (Page 8 of Aaron's Page) 
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#2
04-23-2002, 12:28 PM
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Boy does that sound familier. My son is 6 1/2 and has had a trach for that long. In the last 3 years we got the diagnosis of vocal cords not moving. My son was trached because of Severe Tracheomalacia, and now his cords don't move so decannulation is not in the near future. We've asked WHY don't they move and what has caused them to stop moving and when will they start moving. No one can give us an answer. He sees an ENT and a Pulmonlogist. They are baffled.
I too am frustrated and know what you are going through. Debmomof2
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#3
04-25-2002, 08:47 PM
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You know - you said he wears the PMV all day - does he make any noise?? If SO, then his cords are moving. That must mean that the anesthesia temporarily paralyzed them. Please let us know if he makes noise or not. I am SOOO sorry about this. I read it and just KNOW that this is what will happen to us. One day though, our time will come. love, Sue
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Michael's mom, 2 yo with hypotonia, possible myopathy, vent dependent at night, Beautiful, beautiful smile, and hugs are contagious
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