WOW This is an amazing story. I have heard it said that the parents of disabled kids are aggressive and sometimes even abrasive with the medical staff. I have learned that if parents don't start that way, or learn the ropes pretty fast, they simply are not the parents of children with disabilities anymore. They are the parents of angels. barb > From: fawna33@xxxxxxxxxxxxxx> To: tri-med@xxxxxxxxxxxxx> Subject: [tri-med] > Re: pneumonia/intubation/futility?> Date: Sat, 27 Jan 2007 03:50:47 -0800> > > > Does anyone have a tri13/18 child who was intubated for pneumonia and> > > recovered and if so, at which hospital did it occur?> > > This was at > Children's Hospital in San Diego.> > Miss P has also spent time intubated at > Children's Hospital in San Diego.> Most notably after her aortic valve > transplant in Dec '01, when she spent> quite some time on one, due to > numerous post surgical complications.> > And these in turn were mostly caused > by bad drug reactions to what the> doctors were giving her post op. In fact, > she failed extubation the 3rd> time because the pulmonist kept giving her the > d*ma Lasix, despite my> objections, while the ENT's team were heroically > trying to break up the> cement consistency mucous plugs in her airways...duh, > give a kid with> normally pasty mucous Lasix and guess what happens.> > So of > course she ended up with a tracheotomy. Again duh, I'd predicted> she would, > and had had to endure them asking my husband, "IS she always> this > negative?". (I don't remember his exact response, but knowing him> that's > probably a good thing for his sake.)> > The doctors were all convinced that > she would have to spend the rest of> her life with that thing, but they > didn't know my girl, or me. I don't> usually admit in writing to the covert > operation that led up to her> miraculous mucous improvement, and the > discontinuation of 1st the Lasix &> then the total removal of the trach, but > let's just say that it involved> her beloved Coca Cola as a key ingredient, > and the repentant dad as a look> out. And that I would have probably been > kicked out of the hospital for> life if they'd known what was afoot.> > Point > is though, it worked! But obviously logic doesn't always come with> a medical > degree. No that's more the territory of a medication/treatment> nurse who > after spending years in the trenches of understaffed, under> supplied > convalescent homes, has moved on to pretty much doing the same> thing at home > (i.e. trenches, understaffed and under supplied).> > Fawna, Research > coordinator TRIS Project, mom to Miss P 24 yrs (PT6p &> Moya Moya Syndrome)> > > > 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