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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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Old 04-25-2012, 06:31 PM
johnnyw12781 johnnyw12781 is offline
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Join Date: Apr 2012
Location: MA
Posts: 10
Default Just Introducing Ourselves

Hello everybody!
My wife and I recently brought our daughter home. We life in Milford, MA. Little Ellie was born on January 19, 2012 (7 weeks early) at Brigham and Women's Hospital in Boston. She was diagnosed with Beckwith-Weidemann Syndrome. For a while, they thought her breathing and feeding issues were associated with her prematurity, but after a while, we found that it was the BWS all along. With the BWS came an enlarged tongue which blocked Ellie's airway creating the breathing and feeding issues. On 3/27/12 she was transferred to Children's Hospital where she underwent surgery for a tracheostomy and gastrostomy. She was finally discharged from Children's on 4/12/12 and saw real daylight for the very first time! Her time at home was short due to some desatting the following Sunday night which caused her re-admission to Children's. They finally discharged her for the second time that following Thursday and she has been home ever since.
Ellie is our first child and despite a rough pregnancy and a complicated birth, we love her very much.
So in any event, I'll be poking around the boards in search of some conversations that may ease this perpetual knot that has planted itself in my stomach.

Nice to meet all of you!
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Old 04-25-2012, 09:41 PM
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kadiera kadiera is offline
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Join Date: Jan 2009
Location: Troy, MI
Posts: 2,541
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Welcome! I think you'll find lots of good info here and lots of really helpful people.

It's pretty common for trached kids to go back to the hospital pretty quickly after going home the first time. (we bucked the trend with our 2nd, but then, we originally only lasted 5 days out of the NICU before ending up back in the PICU, intubated, and eventually trached, so I think we got our return trip out of the way pre-trach)
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Janet, crunchy pagan automotive engineer mom to Alexander, born at 27 weeks, 1 lb 7 oz | vent/trach/gtube @ 5 months for BPD | g-tube free 7/11, trach free 8/11. Also mom to Bethany born @ 28 weeks, 2 lbs | gtube @ 5 months | trach/vent @ 6 months for BPD, bronchomalacia, trach free July 2014!
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