[tri-med] Re: request pics/videos

 
we think music will be Oh very young- cat stevens and louis armstrong-what a
wonderful world. 

both songs can make me cry just thinking of them


----------------------------------------------------------------------------
From:  "Catherine Trewin" <ctrewin@xxxxxxxxxxxx>
Reply-To:  tri-med@xxxxxxxxxxxxx
To:  <tri-med@xxxxxxxxxxxxx>
Subject:  [tri-med] Re: request pics/videos
Date:  Tue, 28 Feb 2006 18:33:11 -0500
you are needing these pictures soon as possible Barb??



-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx
[mailto:tri-med-bounce@xxxxxxxxxxxxx]On Behalf Of Gina Anderson
Sent: Tuesday, February 28, 2006 6:33 PM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] Re: request pics/videos


when does she need them gina
----- Original Message -----
From: "Catherine Trewin" <ctrewin@xxxxxxxxxxxx>
To: <tri-med@xxxxxxxxxxxxx>
Sent: Tuesday, February 28, 2006 4:51 PM
Subject: [tri-med] Re: request pics/videos



Gina wrote:
i guess i miss simething here. so explain it to me gina son taylor




Gina, Barb posted this on the 22nd and then later asked for pictures of our
kids to take to a meeting with Sick Children's Hospital...


-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx
[mailto:tri-med-bounce@xxxxxxxxxxxxx]On Behalf Of Barbara Farlow
Sent: Wednesday, February 22, 2006 6:45 PM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] trisomy euthanasia


  Hi,   We are continuing in our quest to understand what happened to our
precious daughter, Annie (tri 13 05/25/05-08/12/05).   The things we know
with certainty that happened in the PICU in the last 24 hrs of Annie's life;
   1) The dr entered an unconsented DNR after an earlier discussion in which
we emphatically refused a dnr, with the reason that we needed to know what
was causing her respiratory distress. No diagnostic testing,(MRI, CT,
Bronch)was done, besides a CXR. If the CXR revealed a fatal condition, we
were not told. Previous discussed concerns were tracheal stenosis and
malacia, but on her last day, we were told "her trachea is fine"   2) A
nursegave a supplemental full dosage of chloral hydrate, 2 hrs after the
lastordered dosage, with NO dr. order   3) The computerized medication
reportform the last nursing shift which was the last 3 hrs of Annie's life
isinexplicably missing.   4)With no evident reason, the pressure settings on
the BIPAP were increased by 40% to 14/10,one hour before Annie died. All
sources I have found state that this pressure could cause barotrauma to the
lungs. She had "smallish" lungs, I am guessing, like a newborn.   5) 15
minutes before she died, Annies vitals were; RR 35, HB 140, Good perfusion
(<2 sec refill),o2sat 97% (near death?)   6)Dr. are protected by the law to
do anything, so long as it is what another dr would likely do in the same
situation. As the tradition is to treat trisomy 13/18 palliatatively, then
not doing anything to help is acceptable.     I have 2 questions, I am
hopingyou can help with:   We are trying to prepare a video to show to the
drs involved about what Annie meant to us and why we wanted to give her a
chance at life. Does anyone have anything to contribute in answer to the
question, " Why perform life-prolonging surgery on a trisomy 13/18 child"
To us, it is obvious, yet we wonder if we are in our own world, as so many
disagree. The home pediatrician, after we told the story above said, "
sometimes it happens that the parents just don't get it; when that happens I
prefer not to deal with it, so I send it to someone who can. The problem is,
adults don't usually last long, but children can go on and on and on. (this
ped. was given to us by the geneticist for Annie- I call it lambs led to
slaughter)The pediatrician sent us via ambulance to the big children's
hospital, 24 hrs before Annie died. I guess we were sent so that others
could"deal with it" Can anyone help here, because I am afraid we still don't
"get it"   Does anyone deal with a kind pediatric pulmonologist with whom I
could request a consult?   Prior to our daughter's birth, we had been
assuredby genetics and bioethics that surgery was a discussable option. This
was not true. The plan to not diagnose her cause of respiratory distress was
systemic, involving the ER, primary ped and PICU doctors. I have come to
believe that parents of children that are severely delayed must be vigilant,
agressive and untrusting, especially in countries with a socialized medical
plan.   There is no protection for these children, and even the public
doesn't care. It seems that most people (I have heard 99% mentioned) think
our kids are better off dead. Very sad, because of course, who is next?
Whichone of us is really perfect?   Your contributions; thoughts,
suggestions, names etc are very much in needed and appreciated.   With
gratitude, Barb
                   Building ___ooOOoo__ Rainbows
                        www.trisomyonline.org
                   Families Helping Families On-line


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



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

                   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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