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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
06-15-2004, 12:59 PM
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Ben had a normal sleep study on Saturday night! His pulmnologist called on Sunday to say we could discontinue the use of the C-pap, cap Ben's trach all day AND night, and that he now had a good airway, that didn't require a trach! All he has to do to be decannulated is handle his secretions. He has been drooling much less, but lately has begun to aspirate almost constantly. He'll have a swallow study on June 30th so we can plan our next move. We are looking into e-stim and medications to help dry up his secretions. This is all so fast, and fabulous!
 Jenny
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Jenny, mother of Benjamin, born 37 weeks 5/2/02, 2 cardiac arrests in first week of life, trached/G-tube/Fundo at 4 wks, ASL , page 19, St. Louis, Decannulated 4/25/05!! G-tube removed 5/15/06. Tethered spinal cord, likely diagnosis of Dystroglycanopathy. Also mother to Alex 35 wkr born 6/11/05. http://www.geocities.com/benjaminashaffer/index.html 
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#2
06-15-2004, 02:31 PM
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That is awesome news Jenny. I hope you can get his secretions under control soon and get that trach out!
 Ann
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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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#3
06-15-2004, 04:44 PM
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Great news! Congratulations! I hope Ben is trach-free soon!!
Amy
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Amy - Mother to Corey(4-13-02), 27 weeker (1lb. 10oz.):BPD, Tracheobronchomalacia, Subglottic Stenosis, G-button, been off ventilator since March 2003. Â*Decannulated August 16, 2004 and now g-tube free as of August 10, 2005!!!
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