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#1
03-05-2007, 11:25 PM
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Hi ! I'm Ashley
Hello everyone.... I'm Ashley. I'm 17 month old. I was born with Hirsprungs Disease. I had 2 surgeries. One to put colostomy and the second was to reverse it. I was coded twice. I was in NICU most of the time. I was intubated twice. I was strong. I managed to come back.
 I'm home now. I use bipap during sleep. According to my 2 sleep studies, I am retaining CO2. The last sleep study, they changed the mask and placed it including my mouth. They said it helped a lot. But they are thinking and talking about tracheostomy. I'm scared. My family is scared. We've been through a lot. I need help. I need your suggestions. Maybe I need another bipap? or another mask? what's next???? I'm waiting for another sleep study in May. 
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#2
03-06-2007, 10:01 AM
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Welcome Ashley and family. I hope you can manage without a trach if at all possible, but it really is ok, the trach isn't too scary, and you don't have to wear masks on your face, which is kinder IMO. Glad you found us, please ask any questions and we will be happy to help.
__________________
  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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#3
03-06-2007, 11:34 AM
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Welcome. I think you will find a lot of parents on here who will tell you that the trach was a very good thing. It can be scary and you will be taught how to deal with it. Sometimes it is the best option.
Please keep us updated.
__________________
Mom to Breanna (15), David (12), Christopher and Brian (almost 5). Brian decanned in 2006 and had his g-tube removed in 2007.  B & C are surviving triplets. Brooke survived for 1 month.
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#4
03-06-2007, 11:41 AM
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I'm glad you found the boards! Ashley sounds like a fighter. That's great! What hospital do you go to? We go to CHOC. If you go there, I'd be interested in seeing who Ashley's specialists are. The trach really can be a blessing if your child needs is!
 Sarah
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Sarah, Mommy to Malakai (9), Aubrey (8), and Keturah (6) trach, vent, Chiari I, BVCP, CCHS http://s109.photobucket.com/albums/n73/lovemymak/  
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#5
03-07-2007, 07:21 AM
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Hi Ashley- Welcome to the board! You are a very smart little girl with your fancy typing skills so young. Do you have a mommy or daddy we can talk to?
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#6
03-07-2007, 05:41 PM
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diagnosis
Has anyone mentioned Congenital Central Hypoventilation Syndrome (CCHS)? It is what my son is diagnosed with. Hirsprungs Disease is often associated with CCHS. CCHS causes children to breathe slowly and shallowly during sleep and sometimes not at all. They don't have normal reactions to CO2, especially during sleep. Therefore, they have to use a vent or bipap while sleeping for the rest of their lives. Dr. Thomas Keens at LA Children's Hospital is the expert in California. There is a genetic test for the PHOX2b gene that is the cause of CCHS.
__________________
Melisande H. Mother to The Preeminent Grand Poohba Donovan (5/27/03), still some "resolving" apnea, on the autism spectrum and some cerebellar malformations. Trached since he was 6 weeks old. Recently DECANNULATED 4/16/09!! Big brother to Conrad! 
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