[tri-med] Re: pneumonia/intubation/futility/penny

Thanks for your response, Penny.
 
I didn't mean to indicate that it was the thought of all intensivists; but this 
was one of the TOP five kid's hospitals and he was unwavering in his 
convictions. 
(at the same time admitting not to being an expert in genetics but....tri 13 is 
lethal, he said)
 
I think that if one dr provides you with assurance, you have to remain very 
guarded against unfamiliar ones. Annie's records state 'not DNR' four times in 
24 hours before the DNR was entered without consent.
 
My biggest question (and source of greatest sorrow) is if they weren't going to 
provide life saving treatment, why did they have to let her suffer so much? I 
am not sure they saw her as human. Watching your child being bagged for 1.5 
hours (before being accepted in the pICU) is a horror that is difficult to 
forget.
 
Barb
 
mom to sweet Annie 05/25/05-08/12/05


> From: plugginalongpv@xxxxxxxxxxxxx> To: tri-med@xxxxxxxxxxxxx> Subject: 
> [tri-med] Re: pneumonia/intubation/futility?> Date: Fri, 26 Jan 2007 17:33:46 
> -0500> > Hi Barbara :o)> I completely understand what you're saying 
> here...BUT...just to play devil's> advocate...and to be fair...we have to 
> remember not to make assumptions that> ALL or even most intensivists share 
> this line of thought. Just as we don't> like it when a certain specialists 
> makes assumptions about our children> based on the T13 or 18 DX alone. I 
> always have to remind myself that I tell> doctors and nurses and therapists 
> all the time that making a blanket> statement such as "ALL T13 babies die by 
> the age of 1" is just BEGGING to be> disputed :o) This actually sounds funny 
> coming from me because just a couple> months ago I took Devon to a 
> pulmonologist and we ended up with our regular> docs' partner...WHAT A 
> YUTZ!!!! He did exactly what I said...made many> assumptions based solely on 
> Devon's T13 DX and he didn't believe a word I> told him!!! Didn't seem to 
> matter that Devon was standing there plain as day> and 11 years old to 
> boot!!! GRRRRRRRR > However...we just got home a little while ago from our 
> first visit to a> neurologist for the ongoing hyperactivity and 
> behavioural/aggressive> tendancies that Devon has. We really like this guy!!! 
> He asked many many> intelligent questions about Devon and although he was 
> surprised by Devon's> lack of many of the life threatening health issues that 
> can go with a T13> DX...he didn't assume anything and he didn't make us feel 
> like idiots either> :o) His treatment of Devon and of us went a long way to 
> sooth my feelings of> utter failure as a parent because we can't seem to get 
> a handle on these> things with out help from medication :o( This not an easy 
> decision to come> to believe me!!!!!> Anyway...I think you need to keep on 
> doing just what you're doing...keep> trying to educate the medical 
> professionals...ask questions and keep good> records of what you're told. 
> Hopefully getting to the truth of things and> perhaps making at least some of 
> these doctors re-examine their treatment of> your sweet angel will help you 
> to heal a little too. > Love,> Penny...loving & devoted wife to Joe, the best 
> husband in the world...mom to> Nick (16 yrs old...lover of Fishing, Dragons, 
> Turtles, Blue Collar Comedy> Tour, RollerCoasters, Chocolate Icecream w/ 
> Ovaltine sprinkles, Devon (11> yrs...lover of Barney, Blue, Nappy ol' Bear 
> w/dreadlocks, Elmo, & food in> general. Full trisomy 13 w/balanced 
> translocation 5 and 13) , and Trooper> the Wonder Dog...our 10? year old 
> yellow lab adopted from FL Lab Rescue> 12/13/02 :o) Please visit the webpage 
> my wonderful friend Karen made for me> on our trisomy listserv at:> 
> http://www.trisomyonline.org/victor.html > AND...Devon's moment of glory in 
> Exceptional Parent Magazine...> 
> http://www.eparent.com/familiarfaces/ffaces_4_01.htm> AND...see our Trooper 
> on FL Lab Rescue's website at:> 
> http://www.labradorrescue.net/success/index.html (Look for the name Trooper)> 
> AND :o) http://livingwithtrisomy13.org/album9.htm> AND 
> http://web.coehs.siu.edu/Grants/TRIS/> "Normal people worry me"> > 
> -----Original Message-----> From: tri-med-bounce@xxxxxxxxxxxxx 
> [mailto:tri-med-bounce@xxxxxxxxxxxxx] On> Behalf Of Barbara Farlow> Sent: 
> Friday, January 26, 2007 3:04 PM> To: tri med lists> Subject: [tri-med] 
> pneumonia/intubation/futility?> > I was speaking to an pediatric intensivist 
> at one of the best Children's> hospitals in the country.> > He said that he 
> would not intubate a trisomy 13/18 child with pneumonia> because he would 
> consider it to be medically futile.> > I think this is a very significant 
> statement and one of great concern. If> this is what most intensivists 
> believe, parents should know it.> > > > Does anyone have a tri13/18 child who 
> was intubated for pneumonia and> recovered and if so, at which hospital did 
> it occur?> > > > Thanks,> > Barbara mom to Annie 05/25/05-08/12/05> 
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