Thank God you had such wonderful doctors, Jennifer. I am so glad your sweetheart Elanor pulled through it all. Thank you for sharing this story. Barb > From: phil46@xxxxxxxxxxxx > To: tri-med@xxxxxxxxxxxxx> Subject: [tri-med] Re: > pneumonia/intubation/futility?> Date: Sat, 27 Jan 2007 12:42:42 -0700> > 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> > > _________________________________________________________________> > Be one > of the first to try Windows Live Mail.> > > http://ideas.live.com/programpage.aspx?versionId=5d21c51a-b161-4314-9b0e-4911fb2b2e6d> > > Building ___ooOOoo__ Rainbows> > www.trisomyonline.org> > Families Helping > Families On-line> >> > > > > Building ___ooOOoo__ Rainbows> > www.trisomyonline.org> Families Helping Families On-line> _________________________________________________________________ Be one of the first to try Windows Live Mail. http://ideas.live.com/programpage.aspx?versionId=5d21c51a-b161-4314-9b0e-4911fb2b2e6d Building ___ooOOoo__ Rainbows www.trisomyonline.org Families Helping Families On-line