Posted on December 12, 2008 at 11:23am
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December 11, 2008
I have two sons with Duchenne Muscular Dystrophy; age 27 and 29 both have lived past their life expectancy of late teens to early twenties. Both require constant care and assistance with all daily life activities. That being said both are wonderful bright young men with outgoing personalities and great attitudes.
Both of my young men need durable medical equipment for a variety of reasons, for now I’d like to talk about David and what I’ve just discovered about DME…
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Here is my contact information KMrey@aol.com. Please shoot me an email and I will make introductions between yourself and Louie Boitano RT at the U of W who is very involved in the DMD community and will be a good resource for you re: sip and puff vent. set up during the daytime. I also posted a comment on the Vent users site to you :-)
Katherine
I haven't been on the site for a while now, we haven't resolved the distention issue. Curtis does not have a G-Tube any longer so your suggestion isn't possible, thanks. It is a constant dilema of sorting out one mangement situation to the next. Unfortunately his primary care physician is not very engaged... this makes it very difficult in acquiring the support Curtis needs. Alternate Dr's. not taking new patients in his community- there is a real shortage. As a nurse I struggle with being his health care advocate a lot! Love to get to know you-
Robyn :)