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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
07-22-2011, 11:23 PM
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Pending Bronch
Jacob has a bronch next week, his first since his failed decan last year. "If" there has been enough improvement in his airway, they will downsize his trach and admit him for a capping trial overnight. "If" that goes well, he will come home capped. Given Jacob's history, I do not use the word, "if" lightly.
 Wish us luck.On the positive side, Jacob is really coming along with his oral eating. He is slowly getting the hang of a straw and is loving his yogurt drinks. He is also growing!
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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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#2
07-23-2011, 12:34 AM
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 & more . After two airway surgeries I'm sure you are ready for some good news. We go in for a laryngoscopy on Monday. So I know the feeling. I'm so glad to hear he's doing well eating!  Congrats! That's huge!
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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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#3
07-23-2011, 02:41 AM
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luck
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  Life is not measured by the number of breaths we take, but by the moments that take our breath away. Mum to an ex 24wk prem now 4 yrs old with Chronic lung disease, chryocid web, immobile vocal cords and vision impaired from ROP. Decanned 10th March 2011 , plan to repeat LTR due to body reabsorbing graph, date unknown 
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#4
07-23-2011, 07:36 AM
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sending you lots of positive thoughts and luck!!! We are in the same boat...Harrison goes in for a bronch, laryngoscopy, lung wash, etc on Wednesday. "if" all looks good, we will downsize the trach and hope that our capping trials have a bit more success. Keep us posted!
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 SUSAN-mom to Harrison, born full-term(11/1/10) with an undiagnosed congenital diaphragmatic hernia (CDH), hypoplastic right lung (caused by hernia), trached at 4 months, g-tube and fundo at 6 weeks. Home in March 2011. Weaned completely off of the vent in July Wearing PMV 24/7, 02 at night, failed decannulation in October. Hoping for better results next time!www.caringbridge.org/visit/harrisonsnow
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#5
07-24-2011, 06:45 PM
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Good luck Kim. Hope all the "Ifs" come true.
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Ann-mom to Jack- 14 yrs old;vent dependent;dystroglycanopathy congenital muscular dystrophy; also mom to Hilary (22), Mary (19) and Eric (10) Jack's Journey and Then Some TouchStones of Compassionate Care The Willow Tree Foundation   “Somewhere over the rainbow, skies are blue, and the dreams that you dare to dream really do come true”
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#6
07-25-2011, 08:41 PM
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Kim, Sending you lots and lots of GOOOOOD LUCK!!
Am sooo happy to hear that feeding is going well! Way to go Jacob!! WOOHOO! 
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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
07-26-2011, 07:37 AM
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Good luck!
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Janet, cruncy 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  
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#8
07-27-2011, 09:04 AM
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Ohmygosh, Kim.
Wishing everyone the best of luck. Safe travels!
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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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