[tri-med] First night home...

Discharge from the hospital took hours................. But we finally made
it home just before 5 pm. The respiratory people were there to finish
setting up Hannah's equipment. They brought a stationary suction system.
It's the one thing they didn't actually "set up", and it isn't sucking (and
that sucks! <grin>) so we will have to continue using the portable at least
until Wednesday. They could be reached now but it's not really an emergency.
The intake nurse from the nursing agency came just a few minutes later so it
was rather hectic for a while, 3-4 people in her room trying to do their
thing, plus Hannah, and then me, trying to do paperwork for everyone and
listen to instructions, etc. The intake nurse asked why we didn't have 24
hour nursing. That would be nice. We weren't the ones who specified the
time, the doctor did that. Maybe after we've had Diana for a bit and she
documents what is going on they will change the order. It should be a bit
easier to get now with TennCare as supplement. The nurse who oversees the
g-tubes in the hospital said that if we were in North Carolina Hannah would
automatically get 24-7 nursing because of the trach.
 
Hannah's nurse, Diana, came a little early so we could talk and go over
things. She seems really nice, grandma material, and treats Hannah like a
person. Since we have the audio/video monitor in our room we could hear her
talking to her softly all night, even when Hannah was sleeping. She would
tell Hannah when she was going to do something and what she was doing.
Hannah's machines, most specifically the pulseox, gave Diana and Donn fits
all night long. We still have the pulseox from the other company so we are
going to use that tonight to see if it's the new machine that is the
problem. Diana only called us once during the night and that was shortly
after we had gone to bed but Donn did go in there a couple times when it
looked like she could use a hand. It will take him a while to be able to
sleep through her. 
 
Hannah was pretty much suctioned all night long. But Donn figured out
something early this morning. If he let Hannah blow out stuff for a bit, and
he didn't suction quite as much, she slowed down on production and he didn't
HAVE to suction as much. Donn gave her chloral hydrate about 2:30 and she is
still awake but drowzy, calm and relaxed, listening to her "Beauty and the
Beast" DVD and hasn't really needed to be suctioned an awful near as much...
every 15-20 minutes instead of every 5 or more often!  We do still need to
be close at hand to watch for the biting, etc. but not standing right there
at bedside. Just having someone in the room with her all the time, who knows
what to do if needed, is enough.
 
We have a couple needs that someone might be able to give us leads on... 
#1 - since Hannah's bed is so high we need to find someone that can build a
sturdy step/platform to put at the edge of her bed. This would allow a step
up to make it easier to get to the far side of her and her bed. We are
looking for something about 12 inches by about 4 feet long and standing
about 8 inches high. Something that is well braced so it would support 2-3
people if needed. (Lots of times there are two people working on her for
things. Especially now, with trach changes.) If any of you know of someone
in the area who can make something like that at a reasonable price, please
let us know. 
 
#2 - Clothing is now becoming an issue. I have ordered some t-shirts but I
need someone that can alter the necklines for us, making them more scoop
necked. We will need this done on an ongoing basis, probably more in the
fall/winter than summer but still ongoing. Eventually I'd love to have some
long t-shirt-type dresses with accomadating necklines made for her. If
anyone knows of anyone who can do this, let us know.
 
All in all, I think we are all very glad and very grateful to be home!!! And
very grateful for your friendship!
 
Have a very blessed Christmas!
 
Anyone who wants an e-mail copy of our Christmas card/picture, let me
know... jlvking@xxxxxxxxxxxxxxxxxxx
 
 
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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