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

> 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)


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