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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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#2
06-10-2009, 01:58 AM
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Tommy once covered his face with a blanket and everyone freaked out that he would suffocate. I just sat back and kept doing what I was doing and calmly reminded everyone in the room that he was breathing through his neck. Strange moment.
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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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#3
06-10-2009, 07:41 AM
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When you find feeding bags and seringes, heparin and Broviac dressings in a box in the spare bedroom of your house
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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#4
06-10-2009, 07:54 AM
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When your child prefers medical supplies to actual baby toys!
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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
06-10-2009, 08:26 AM
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When you teach your child all the things "typical" parents are telling their kids not to do....
spit climbing up the slide stick out your tongue
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Katie-mom to Mitchell, DOB 12/16/04 trisomy 13 mosaic, severe laryngotracheobronchomalacia trached 5/04, cleft lip and palate DECANNULATED 12/16/10 A GREAT BIRTHDAY GIFT! www.caringbridge.org/mn/mitchelljohncragg 
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#7
06-10-2009, 08:51 AM
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Quote:
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#8
06-10-2009, 10:19 AM
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Quote:
And Rynn once dared a boy to try to hold his breath(mouth breath) longer than her sister could!!
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Kris 3/24-26wk twin girls born 7/01 at 1lb15 & 1lb13. Rynn-trach. malacia, Grade 1 SGS, reflux, asthma, autism(high funct. Asperger's) & epilepsy. Madelyn-severe trach. malacia, Grade 3 SGS(Trached 10/21/01 to 11/20/11 DECANNED) ,PVL,BPD,CP,submucousal cleft,reflux, G-button(12/01), nissen X2, off vent '03.Two of the most Perfect Princesses!  !!
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#9
06-10-2009, 10:35 AM
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when you kinda wish they would eat crisps, chocolate, and butter instead of strawberries, grapes, and peas :-)
when you have to nip into the shop and realise you can't actually carry the kid, the 2 bags, AND your parcels. so there is no such thing as "nipping" anywhere!
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*clare. mum to emily  12/02/07 (placental abruption)APGARS 0+1 (HIE gr.2/seizures) but she MADE IT! with the determination that we still see in her every day. Grade III SGS - emergency tracheotomy July 2007. 2 stage LTR July 09 - DECANNED 27.9.09 tracheomalacia (GONE!! Sept08) partial agenesis of the corpus callosum residual VSDs post-surgery but lung pressures normal (Nov08), ?septo-optic dysplasia. 
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#10
06-10-2009, 10:57 AM
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when you run out the door, and always check to make sure there are catheters and saline in the suction bag; but are often stuck without a diaper in the diaper bag.
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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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