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

Our Elanor had congestive heart failure due to a large vsd.  She repeatedly 
came down with rsv & pneumonia during the first 2 years of her life, even 
after having pda surgery done at 9 months.  She came down with rsv, then 
pneumonia when she was 13 months old, and was hospitalized on Valentine's 
Day.  She continued to go downhill, so they intubated her to see if she 
could recover.  Her heart was so bad at that time, that it was either do the 
open heart surgery, or let her go.  We decided to go ahead with the surgery. 
It went well, but they damaged a nerve on the left side of her diaphragm, so 
she couldn't get enough oxygen.  They put a trach in and she was on a 
respirator for 6 months.  They weren't sure if the nerve would heal, but it 
did in record time!  So, yes they intubated her, did a "risky" surgery, then 
had her on a respirator, even though she has t18.  We had all of this done 
at St. Luke's Regional Medical Center in Boise, Idaho.  They have been 
fantastic about respecting our wishes and seeing Elanor as a little girl, 
not a chromosome defect.

Jennifer
mom to Arwen, 8; Elanor (T18), 6; caregiver to Joe & Eric (both w/ cp); and 
wife to Andrew
----- Original Message ----- 
From: "Barbara Farlow" <b_farlow@xxxxxxxxxxx>
To: "tri med lists" <tri-med@xxxxxxxxxxxxx>
Sent: Friday, January 26, 2007 1:04 PM
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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