[tri-med] Re: Philina Update

Hi All,

It's been a very busy week for us.  Tuesday we did
all of the pre cath tests (chest x-ray & EKG).  All
went reasonably well with that.  Only problem was a
malfunction of the EKG machine, it wouldn't print out 
any results.  I took her out for lunch afterwards
at The Chicken Pot Pie Shop, one of her favorite 
places, which was a real good idea since it turns out
she'd lost 7 lbs (down to 104) with all her lack of 
eating after the eye surgery anesthesia.  Got one
really good last meal into her before her anesthesia 
for the heart cath.  She cleared her plate.  And then
ate most of a large bag of gummy bears at the movie.
Yes, I took her, and she loved it.  About 2 hours
in she got a little antsy, but we made it through
the whole sitting.  And at the end she waved back at 
them.  (Yes Duke, we loved Fluffy...LOL.  Thanks for 
the movie recommendation).

The heart cath was yesterday.  She did real well, except
she's not eating again yet, even with 4 doses of anti
nausea meds (3 during surgery, & one in recovery).  The
results of the cath have changed the plans again.  New
plan:  Her own pulmonary valve is actually in good shape
after all.  They're going to move it over into the aortic
position (even less chance she'll reject her own tissue),
and put in the cow valve in the pulmonary position.  It's 
far less critical, and under less pressure, so should hold 
up even longer there, then it would have if in the aortic 
position.  Cow valves haven't been in use long enough for 
real long range evaluation, but in the short term they are
doing better then the pig valves they used previously.  They
figure she should get at least 20 years out of this one. 

Her open heart surgery has been scheduled for Dec, 11th, with
4 to 5 days in hospital stay required.  I'm not sure I really 
like that day for several reasons, my sister is due in here on 
the 14th for starters, but considering the heart cath date and 
time were changed 4 times along the way, I think I'll just trust 
all will be fine at this point.

Her IEP is scheduled for Dec 6th too.  Should make for a very 
interesting month.

 
Fawna, mom to Philina 18 (PT6p)
Philina's Pharm, Escondido, CA USA
http://members.aol.com/sorgl/famtoc4.htm
"We could learn a lot from crayons: some are sharp, 
some are pretty, some are dull, some have weird 
names, and all are different colors...but they all 
have to learn to live in the same box."


 


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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