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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
05-19-2009, 09:39 PM
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New Vent Orders
Just wanted to share with everyone that Tommy finally got the official doctor's orders to be off the vent during awake hours as tolerated!!!
 It kind of seemed weird though  We always go to Cincinnati for ENT & Pulm, but because we are from Illinois, we still check in with Illinois children's hospital specialists just incase we need to show up at their door for an emergency. It has been almost 2 years since we've been in to see Pulm in Chicago because of all Tommy's surgeries out in Cincy and cold, flu & RSV seasons (not taking my kid for a clinic appointment just to update records and risk him getting deathy ill ) Guess Tommy made quite an impression in just an hour appointment for our Chicago doc to give the orders, but I'm so glad she did (And I'm sure the nurses are glad they don't have to chart vent settings every hour for a kid who won't stand still long enough to hook him up to his vent )
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Father (and mother) to Tommy, born via an emergency EXIT to Trache 8/1/06. Diagnosed with Congenital High Airway Obstruction Syndrome (CHAOS). VACTERRS Syndrome. Vocal cords completely fused until Double Staged LTP 03-03-08, refused shortly after stent was removed. Second Double Stage LTP 1-20-09. CarePage: BabyBoyce “With man this is impossible, but with God all things are possible.” 
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#2
05-19-2009, 10:25 PM
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This is great news! Congrats!
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#3
05-19-2009, 10:30 PM
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Yippee... that is great news!
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 Lynn, mother of Brooke(19), Haely(17), Sydney(12)Dominic(1) and Joseph(DOB 11/03/06)DX:Jeune's Syndrome:trach 12/12/06:vent depend: Sprinting 12 Hrs a day!!!!EE:GERD:Hydronephrosis:Situs Inversus:Aortic Stenosis:Myocardial Hypertrophy:Kidney Transplant 08/18/10 http://www.caringbridge.org/visit/josephmollica
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#4
05-20-2009, 12:48 AM
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WAHOOOOOOOOOOOOOO... that is SOOO exciting! congrat!
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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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#5
05-20-2009, 08:51 AM
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That's fantastic!!!!
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Gabriel: born 12-07 PRS G-tube and Nissen 1-28-08 Trach 6-06-08 Palate repaired 2-03-09 www.caringbridge.org/visit/gabrielsmith
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#6
05-20-2009, 09:01 AM
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Congrats!
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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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#7
05-20-2009, 09:01 AM
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Isn't that wonderful!
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Karin Alex's Mom Alex born 6/19/2007, PRS, Trached and GTube at 3 weeks, palate repaired 12/20/2007, failed decannulation 5/7/08 due to undiagnosed suprastomal collapse, jaw distraction 9/9/08 (insertion) to 10/30/08 (removal). Single Stage LTP 2/17/09 and now member of the Naked Neck Club. Need a laugh? Check out http://itsallgoodtoday.blogspot.com/ 
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Perhaps it own't be too much longer until he can get off it permanently.|
#9
05-20-2009, 10:22 AM
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Yeah!!!! That is a big, huge win! Thanks for sharing.
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Suzanne Mom to: Berkeley (June 2002),Griffin (July 2004), and Parker (November 2006) My family blog: http://www.mylifewithboys.typepad.com Parker's LTP Blog: www.parkersplace.wordpress.com 
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