[tri-med] Re: [tri-family] Re: ER -Jim

----- Original Message -----
From: "Catherine Trewin"
>>what came
> across was 'of course this is treatable and just what we would do if any
> child came through these doors with the same symptoms.'
> I am not finding this to be the case with Becky's doctors and finding it
> extremely frustrating.

Catherine,
I do understand exactly what you mean and I send you HUGE hugs.
I still get this with Alex all the time, even when he is doing so well. And I 
KNOW that it is purely his diagnosis.
Because we didnt get the trisomy diagnosis until he was 15 months old I can 
clearly see the change in attitude. Plus I also have it
in black and white from the head of pediatric intensive care. For those of you 
who dont remember or who are new, some years back I
was embroiled in a VERY bitter battle with our Children's Hospital over 
treating Alex, especially as the exact nature of the problem
was unknown.
It resulted in me making formal complaints about specific doctors and 
departments to the hospital and with threats of going to the
Health Care Complaints Committee and Ombudsman. Eventually the Hospital Admin 
got real scared that if anything happened to Alex I
would go all the way in suing them and I that I had a paper trail a mile long. 
Actually I think it was that paper trail which scared
them the most.

They appointed the head of ICU to mediate. He admitted when I went to the final 
meeting that he had every intention of denying Alex
full resus rights but by the time I had finished that day he had done a 
complete back flip and did the advanced CPR training for me
himself and PERSONALLY authorised us to have airways, oxygen, bagging equipment 
at home. And he also put it in black and white that
Alex should be treated as an individual not as a child with T-18.

As a result of all this we were given a letter to take with us to the hospital 
which states that Alex should be treated fully
regardless of the diagnosis. The sad part is that this means we have been 
correct and children with T-18 are not normally treated
based on problems not diagnosis.

I was lucky, and I think that the only reason, actually I know that the only 
reason I managed to get those accomodations is because
we had a wonderful pediatrician who was willing to put his neck on the chopping 
block more than once for us.

I dont think that there is a name or a label that I havent been given over the 
years. Sadly I have earnt most of them one time or
another. But despite this our ped has stood by us. Even sometimes when I am 
sure that he had his own doubts. We would get reports
back from specialists and I would say I dont agree, sometimes he wouldnt agree. 
But either way he would send us to another until we
were happy that we were being treated seriously and objectively.

Its funny but now if I mention to people at the hospital about the "unwritten" 
policy of not treating children with T-18 they dont
even deny it. In fact most agree and some will even enter into discussions 
about the right and wrong of this.

We, meaning all of us, have a long way to go before attitudes change 
everywhere..........

For the birds that cannot soar, God has provided low branches.
  -- Turkish Proverb

Keep Looking for Rainbows!!!
Karen, Mum to Alex (6, T-18 mosaic)
Sydney, Australia
http://members.optushome.com.au/karens
http://www.trisomyonline.org

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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