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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
11-04-2008, 10:21 PM
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We won our RSV appeal!!!
We found out today,hes going to be 5 in three weeks & we still got approved for the synagis!If it was just left up to his ped. he wouldnt be getting it,but I called the dept of health & raised H***!...Oh thank God!I even called the manufacturer to see if they were doing any clinical trial for older kids,no call back of course,but even decanned he still got it.My advise to everyone in the same boat is fight,fight,fight!..................Angie
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 Ayden 6 yrs,tracheomalacia,G-T,nissen,rare type dwarfism ,resolved pierre robin,bronceomalacia,Single stage LTP May 2008,now decanned!!! .Ava 2 years www.aydenava.blogspot.com
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#2
11-04-2008, 10:28 PM
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GREAT news Angie!!!!
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Dawn  former 26 weeker -- 4/2006 -- trach, g-tube, nissen; came home 1/07 vented 24/7; Successfully decanned 8/8/2008 -  Follow decan at: http://sleepy-dogs.blogspot.com/
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#3
11-05-2008, 07:17 AM
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Well done you!
Julie x
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  Sam Feb 11 2003 Opitz G/BBB syndrome, mickey, nissen, autistic,supraventricular tachycardia, bronchiolitis obliterans. decanned May 30 2009. 2 brothers Jonathan (23) James (14). I am first and foremost a child
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#4
11-05-2008, 12:46 PM
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 You're the hero of the day! Karen
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Karen, married to Charlie. Mom to Gilbete', Jeanette , Andrea, Ben, Ciara, Brian and Brady. Also mom to Alize who is with God. Grandmother to Marek, Paige, Vincent, Leilani and Cayden, Emma and Samuel. 
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