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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
06-27-2003, 02:45 PM
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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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#2
07-02-2003, 09:39 AM
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Ann
We wish you the best as you prepare for the surgery in September. I know this is hard on you and can see that you're stressed about it all. If she really needs the trach, then you just have to go ahead with it and go from there. Hopefully she will do well with it and not fight you - regardless - you will make it work. Please do keep us posted. Everyone has great ideas concerning supplies and the like around here. christy
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Gaithy's Mom:28wk preemie born 8/2000 at 1 LB, IUGR, SGA, ROP, BPD, g-tube/nissen. Trached 4-2001 and LTV950 ventilator until 5-2003. Decannulated 8-3-04
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