[tri-med] Re: hospital education re trisomy ??

I think you have a great idea, a wonderful resource is Project DOCC.  It
is an organization formed by three mothers of "chronically ill"
children.  They have a program that is set up in the hospital.

I believe you can contact them at www.projectdocc.org.


Faye J. Kaufman
KSA Industries, Inc./Tennessee Titans
Tax Manager
713 881-3422
713 881-3421 Fax
fkaufman@xxxxxxxxxxxxxx

-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx]
On Behalf Of Barbara Farlow
Sent: Friday, March 24, 2006 2:20 PM
To: ecartis@xxxxxxxxxxxxx; tri-med@xxxxxxxxxxxxx
Subject: [tri-med] hospital education re trisomy ??

 Dear Friends at tri-med and wings,   Our discussions with the hospital
in
which our daughter Annie died are not going very well. They have
admitted
that she likely had tracheostenosis (narrow trachea) likely caused by
vascular rings (artery wrapped around trachea) The surgery for this is
very
simple and low risk.   They were very bold and it was clear they had no
regrets that Annie suffered as her trachea closed. They said the 1.5
hours
ofbagging she endured before the PICU accepted her was "relatively
long". In
answer to the question of why they placed a DNR in Annie's chart, the
intensivist recalled a conversation with my husband in the night that
went
something like this;   DR: You know we are doing everything for your
daughterand really hope she makes a turnaround. If she takes a turn for
the
worse, do you want her to suffer? DAD: No, of course not. DR: Ok then,
we'll
make her comfortable.   Bingo! DNR approval..... and missing
computerized
medication report.   As I have stated earlier, the legal recourse in our
country (Canada) is almost nil. I think the best way to affect positive
change is through education.   I would like to suggest we discontinue
specific talk about the horrendous care Annie received, because they
will
create and deny. The more we talk the worse it gets.   I want to suggest
we
educate in the quality of life of disabled kids. For example, if the
parents
of the kids that are very disabled showed a video annually at the yearly
meetings of DRS to show both their quality of life and meaning of their
livesto their families, and also some element of appreciation (swallow)
to
the many fine physicians that help them.   I am asking all of you for
the
contribution of ideas along this line. I am tryiing to remain hopeful,
but
itis very, very difficult to do so.   Is anyone aware of anything going
on
intheir hospitals, or have a comment on ifsuch an idea may be effective?
I
am asking all of you if you have any ideas that may improve the humanity
and
compassion that appears to be missing in this world class hospital.
Thanks
so much for your input. Sincerely, Barb   Mom to ANNIE 05/25/05-08/12/05

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



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

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