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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
06-14-2007, 10:49 AM
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At the Hospital
Hi,
We are at Children's and Ainsley is in the OR as I type. First she's getting a laryngoscopy/bronch. I sure hope it's enlightening. Then she's getting her G-tube, no Nissen. It turned out that despite the GI study showing "significant" reflux, the PH probe showed reflux within normal limits. We know the vomitting doesn't cause problems for her so it made sense not to do it. And yea, she got to keep her surgery date. I'm finally feeling ready and was only just a teeny bit sad when I gave her her last raspberry on the tummy before the G-tube. So think good thoughts for her today please. I'll let you all know how it goes. Thanks, Susan
__________________
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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#2
06-14-2007, 10:57 AM
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I'll be praying for your daughter. she's soo adorable. I hope you get good news.
Robin
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Former 24 weeker, decannulated 2 times, retrached Feb 2006. Mom to 4 crazy kids: Owen 8, Hanna, Bailey and Olivia 6 yr old triplets. Always striving for the perfect airway!  [/url]
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#3
06-14-2007, 11:23 AM
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Hope all goes well! Remember, tummies are beautiful even with G tubes. And, now you can see her whole face without the NG Tube in the way!
Suzanne
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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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#4
06-14-2007, 11:32 AM
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Suzanne,
OK. So you know you've spent too much time on the message boards when the hospital computer logs you off during the middle of a post. Anyway....As I was saying (he, he) Of course their tummies are cute g-tube or not and there will be many post g-tube raspberries to come. You are so right about the face. It's going to be SO hard to wait a week to rip that tape and tube off! I'm so excited to be able to see her face (not that NG tube faces aren't beautiful too). Guess I'd better get back to surgery. Thanks, Susan
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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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#5
06-14-2007, 12:53 PM
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Susan - hope all goes well with the surgery and you can see all of her beautiful face soon
 Love Juliex
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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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#6
06-14-2007, 12:58 PM
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Ainsley is such a cutie - you are in our thoughts and we wish you best of luck today. Let us know how it goes!
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Mom to Elisabeth, former 27 weeker, born 12/18/06. Trached on 2/13/07; subglottic stenosis - airway 90% closed. Now smiling, eating and breathing! [i]** Successful single stage LTP 7/08 **!!
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#7
06-14-2007, 04:10 PM
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Tommy is an itty bitty thing, and he still has PLENTY of room on his tummy for a good raspberry! I know what you mean about the face tape. I was thrilled when Tommy got his trach so I could see his face without tape! What a pretty site she's gonna be (not that she isn't pretty now, but you know what I mean...) Can't wait for the update on how she's doing.
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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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#9
06-14-2007, 05:30 PM
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I hope it went well today!!!!!!!!!!!!!!!
__________________
 http://mamazgirlz.blogspot.com/ Gretch mom to, Heather(22), Aimee(19), and Celia(14) Dandy-Walker syndrome,cleft palate(repaired at 9 yo!),t-tubes,asd, left pulminary arterial stenosis,trach,aspiration,reflux,fundo,g-tube,npo,dysphagia,kidney defect,neurogenic bladder & bowel,spina bifida,scoliosis,seizures,hip dysplasia, sensory issues, ADHD,vasomotor rhinitis,autistic like behaviors, hearing aides.
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#10
06-14-2007, 05:41 PM
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 to you and Ainsley... I am sure all will go well.
__________________
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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