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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
11-27-2007, 09:44 AM
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New here...Addison's story...
Hello, my baby girl Addison was born 6 weeks ago today. She was diagnosed prenatally (sp?) with an abdomin cyst. She had surgery for that at 3 days old and recovered well. She was intubated at 1 day old and a chest tube was put in. She was extubated but wouldn't breathe on her own and intubated again. She did okay for a few days but soon started to struggle to breathe. ENT did a bronch and discovered her airway to be 90% blocked. They are not positive if it is scar tissue from being intubated or if she was born with the narrow airway. She was taken for an emergency trach surgery at 15 days old. Her diagnosis is left vocal chord trauma and subglottic stenosis. I have been told to expect her to need the trach from 1 to 2 years. This is a new world to me and I would love to hear similar stories and learn all there is to know about my special little girls needs. She is still in hospital and we are hoping for a transfer to the hospital closer to home within the next week. Homecare will be our delay in her going home. I also have a 2 year old daughter Samantha.
Shawna
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Shawna - mom to 2 girls, Samantha (3.5) & Addison born Oct 16, 2007 trach'd Oct 31/07. LTP Nov 4/08 and success!! Decanned!   
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#2
11-27-2007, 09:56 AM
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Welcome to the borad this is a great support group. All the people here are wonderful and we look foward to getting to know you.My Daughter had subglottic stenosis also from being on the vent she was born at 24 weeks. She is 3 now and trach free thanks to Dr Cotton in Cincinatti Ohio. You will here alot about him on here alot of us travel to see him he is one of the best ents there is. We look foward to getting to know you and your family. Welcome!
mandi
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Mandi mom to Alissa Former 24weeker born 2-25-04 trached May 04. Had Ltp 11-28-05 Now trach free.  Also mom to Makayla age 8 and summer2 www.caringbridge.org/visit/alissa
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#3
11-27-2007, 11:17 AM
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Your 2 girls are abosultely adorable - Welcome to the board, where you can find the most supportive and understanding people . you can share information, ask questions, vent and even have a few good laughs
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
11-27-2007, 12:19 PM
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Welcome Shawna! You'll find tons of information and support here!
My daughter Kate is 14 mos and trached initially for upper airway obstruction, now trached for subglottic stenosis. She had her tracheotomy done when she was 7 weeks and it took 4 weeks after to get her home. The girls are precious!
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Angela - mom to Zach 14, Jake 12, Nick 9, & Kate 9/28/06 Pierre Robin Sequence, Stickler Syndrome, decannulated July 4, 2008 -- Kate's blog http://pieceofkateb.blogspot.com/ 
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#6
11-27-2007, 01:15 PM
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Welcome to the boards. Your girls are lovely. 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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#7
11-27-2007, 01:42 PM
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Welcome to the boards. This is a great place for information and support so if you have any questions (or just grumps) ask away.
Julie
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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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#8
11-27-2007, 05:30 PM
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Welcome Shawna. I think you'll find this board to be a huge source of support especially during the rough times. My daughter Ainsley was born on 10/18/06 so they almost share a birthday. She was trached at 5 weeks. We brought her home 12/22/06. Getting nursing was the obstacle and in the end we asked to bring her home with a few of the hours not covered so we could get her home for Christmas. If you want your daughter home for Christmas I would get the wheel squeaking now. Good luck.
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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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#9
11-27-2007, 09:47 PM
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Welcome Shawna - you have found a truly wonderful supportive group of people on this board.
 My son Jacob was born at 26 weeks and has been trached since October 17, 2006 for bilateral vocal cord paralysis and laryngotracheamalasia. We are awaiting decan, likely in Spring. Any questions I have had on this journey have all been answered on this board
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Mom to Jacob, 26 Weeker - Our miracle boy, hero  and the light of our lives Born 06/25/06; trached 10/17/06 for bilateral vocal cord paralysis, laryngomalasia, tracheamalasia, acquired subglottic stenosis, Failed Double Stage LTP 2009, Failed Single Stage LTP 09/16/10, Retrached 10/03/10;CP.
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#10
11-27-2007, 11:57 PM
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Welcome to the boards Shawna, your girls are gorgeous !
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May Mommy to Sebastian(1-24-06), hardcore former 26 wk preemie, had and kicked butt of many issues, dealing with a few more , including autism. Trached 4/16/06 @ 3 months due to severe BPD and mild Tracheomalacia. Decanned 9-9-09 and doin' just fine !  http://sebastiansjourney.blogspot.com/
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