[tri-med] Re: Luke Update

>One thing I've wondered, too, due to lack of information, 
>is why Luke had to be in the hospital for nine months.  I 
>know a lot of our kids have severe problems, but have any 
>on the list had to remain in the NICU/PICU for that long 
>after birth?  Even if they have severe issues?  It seems 
>like there is so much help here (in the U.S.? in Michigan?) 
>to get our kids home and care for them there (hospice, etc.).  
>Am I naive about this?

Loren, 

Seems to be far more of a European thing.  I noticed that
to a large extent, the 6p's in the articles we use to find
(all of them out of Europe) spent their lives predominantly
in the hospital, and died either of pneumonia or unrepaired
heart or kidney problems.  

But I can only think of one list member, in the US who's child 
remained in the hospital for months and months after birth, 
before ultimately dying during a move to another medical
facility.  

I'd imagine mom wouldn't still be on the med list though to 
answer you.  Seems to me though it was a very extreme case.  
Several other little ones at home, and a baby with intense care 
needs (tube fed, vented, etc).  Mom was already pretty stressed 
out as it was.  And obviously if they couldn't even safely move 
him to that other facility, she couldn't very well take him home.
So sometimes it's just not really realistic to take them home.

Fawna, mom to Philina 21yrs (PT6p & Moya Moya Syndrome)
http://home.mindspring.com/~fawna33/



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