[tri-med] Re: Justin's button

> On Thursday, Justin woke up and to my surprise, some time during the
> night, he had pulled his button out, and for all of you who knows about
> this, that was a big bad no no. Now he has pulled it out before but it
> has always been in front of me and i have been able to just put it in,
> get the new button and everything would be fine. This day was an
exception.
> His hole had almost completely closed up.

Belinda,

I feel your pain...that equates to one of the worst trisomy week of my
life.
Only since we live so far from the Children's Hospital (where it was put
in)
and there would have been bumper-to-bumper rush hour traffic to get there,
we
foolishly opted for the local ER instead (just up the road about 3 miles or
so from our house).  BIG mistake!!!

First off, we weren't sent home with any kind of emergency hole maintaining
tube to stick in there. Secondly by the time they finally saw her in the
ER,
and informed us we were in the wrong department, then got us an appointment
with the right department, it was mid afternoon already, and the hole was
totally gone.

That hospital didn't use mic-keys anymore, and wanted to put in just a
straight tube...I don't think so. I begged and pleaded, and gave the tech
my
very best Taurean pouty face.  A powerful tool for those who have one, and
know how to use it.  (But one that should also be saved for true
emergencies.
It also got my car bumped up to the head of the repair line in Las Vegas
the
day before the SOFT Conference started in Salt Lake City.)  He succumbed,
so
I sent Doug home for the unopened spare g-tube they had sent home with us,
and he used our tube.  But he warned me not to count on any of the other
techs
doing that for me if it ever happened again.

Not to worry, I will NEVER take her back THERE again! They didn't use any
kind
of anesthesia, not even a local.  They just tied her down, and let her
scream.
She was 19 yrs old at the time.  I could still hear her clear out at the
waiting
room door.  Gut wrenching.

Worse yet, by the next day I had to take her to her ped for an antibiotic,
because it was infected.  Leaving the ped's office, I put her in the car,
walked around to my side, got in, and she threw the new g-tube at me that
they'd just put in the day before. That's when I totally lost it....

Fortunately I do keep a spare syringe handy.  Deflated the balloon, crammed
that puppy back in there, and then arbitrarily upped the water by a couple
of
cc's in the retention balloon.  Problem solved, she stopped pulling it out!
And the Rehab doctor absolutely loved this story at her follow-up
appointment
about a month later....

> I just wonder sometimes, all of you seem to cope so well!!...I envy all
of
> you so much.

Yeah right, coping, I think I probably just blew my cover there...

Fawna, mom to Philina 21yrs (PT6p & Moya Moya Syndrome)
http://home.mindspring.com/~fawna33/



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