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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. |

08-11-2008, 11:30 PM
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Senior Member
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Join Date: Mar 2007
Location: Bardstown, KY
Posts: 2,494
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Tommy's Decannulation Video
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Rene, Mom to my Angel, Tommy. Born 9/25/06 at 33 weeks, with Single Ventricle Heart Defects and Cricopharyngeal Achalasia (Gtube dependant, poor swallow). Trached at 2 months for Severe Subglottic Stenosis. My little flirt died unexpectly 8/20/08 from complications from undiagnosed bronchopneumonia.

Forever, Tommy's Mommy http://www.musingsofaheartfamily.blogspot.com/
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08-12-2008, 12:02 AM
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Senior Member
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Join Date: Dec 2004
Location: England
Posts: 10,932
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Wow rene, that's the first time I've seen a video of a decann! Tommy did great  I know he cried a little, but he did great and was just so cool once the trach came out, just carried on as normal - what an amazing little guy
Julie xxxx
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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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08-12-2008, 03:12 AM
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Senior Member
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Join Date: Feb 2007
Location: Seattle WA
Posts: 6,484
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He did BEAUTIFULLY! What a sight to see. I'm so happy for your family. What a wonderful thing. 
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SUSAN - Mom to Ainsley (age 6 - DOB 10/18/06) + Evie (age 12) and Adrian (age 9). Adorable and Trached since 11/06 (scarred vocal cords & OSA) but capping with mixed success since 1/09, sagittal craniosynostosis (cranial reconstructions 1/07 & 7/07), MicKey G-tube 06/07, Nissen 10/08, unusual form of cerebellar hypoplasia, hip dysplasia (Surgery 11/07 & 4/10), ptosis(post-surgery).
Blog Link: http://ainsleyrae.blogspot.com/
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08-12-2008, 06:07 AM
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Member
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Join Date: Dec 2007
Location: Syracuse, NY
Posts: 696
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Oh, I wish I could crawl through the computer and give him a big hug and a high five! Congratulations!!!
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Amanda's mom, deb.
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08-12-2008, 06:24 AM
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Senior Member
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Join Date: Mar 2002
Location: Moore, OK
Posts: 6,010
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That's great! Too bad they didnt let you take it out so he wasnt crying. Deb 
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Grateful thorns have roses
24 weeker now almost 11 years old and in third grade!
trach-decanned for good in 2008, gtube, asthma, CP, MR, GERD, latex allergy, osteopenia, aplastic cerebellum, ADHD/OCD, 60 lbs of humor and fiest, 4'4" tall, patient at Shreveport Shriners Childrens Hospital,, and I may be leaving something out but she is happy and growing and the light of our lives! DECANNED 6-17-08
[IMG]
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08-12-2008, 06:44 AM
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Senior Member
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Join Date: Jul 2007
Location: Monroe, GA
Posts: 1,434
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Awww ... what a brave little man! Awesome!
Hope
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08-12-2008, 07:43 AM
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Junior Member
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Join Date: Jun 2008
Location: Portugal
Posts: 34
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Hi Rene,
I almost cried watching Tommy's video. He was a brave little boy 
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Sónia
Inęs Mom
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08-12-2008, 07:56 AM
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Senior Member
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Join Date: Jul 2007
Location: Vienna, VA
Posts: 2,227
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What a brave little boy - he did so great I am truly happy for you.
Michelle
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Grand Ma (or Nanou French version of Nana) to Cedric born on August 5, 2006, Trached on October 16, 2007 because of subglottic stenosis due to 27 intubations for debridment of polyps
https://www.babiesonline.com/babies/c/cedric1/
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08-12-2008, 08:40 AM
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Senior Member
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Join Date: Mar 2007
Location: Bardstown, KY
Posts: 2,494
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He wasn't crying because of the decan, he was crying because the ENT resident put on gloves and he was wearing a labcoat. Tommy was afraid he'd get poked again. Plus, we got to hear him cry, so it was okay.
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Rene, Mom to my Angel, Tommy. Born 9/25/06 at 33 weeks, with Single Ventricle Heart Defects and Cricopharyngeal Achalasia (Gtube dependant, poor swallow). Trached at 2 months for Severe Subglottic Stenosis. My little flirt died unexpectly 8/20/08 from complications from undiagnosed bronchopneumonia.

Forever, Tommy's Mommy http://www.musingsofaheartfamily.blogspot.com/
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08-12-2008, 09:03 AM
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Senior Member
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Join Date: May 2007
Location: Cochranton, PA
Posts: 4,870
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I loved how Tommy kept checking his neck knowing something was different. I liked the doctor's explanation too.  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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