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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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Old 06-27-2003, 02:45 PM
Olga Olga is offline
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Join Date: Mar 2002
Location: Barnsley, England
Posts: 437
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I wish I could give some more constructive advice. I have seen a few downs syndrome children in our local children's hospital with a trachy, but I don't know how they go about being suctioned. Is there a website for carers of downs syndrome children that can help. Where abouts are you? Is it possible to get a second opinion?
I have never heard about the 1 in 20 mortality rate. In our case Grace would have died if she hadn't been given a trachy. Does the consultant realise the implications re suctioning your daughter? I do hope that things work out for you. Olga
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Mum to Grace age 8 1/2. Subglottic haemangioma. Decannulated 19/12/03 after being trached for 3 years & 3 months.
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