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Thursday, June 13, 2013

Update.. Day 6 - Setback.

Setback.
Just one word..one period of 24 hours, actually maybe it was just
12 hours.. soo much can happen in a timeframe.
Grace has had a setback.
how much does a little girl have to go through in her life? Really???
 
They started feeds on her Tuesday evening..with a bolus of 4 oz at 6pm
and then starting at 10pm, they went continous of just over an ounce an hour.
Gary stayed with her, I went home for some rest & a meeting.
As the story has been told to me, around midnight Gary saw that her belly
was getting dissended (full, hard to the touch)..
he asked the nurse to call pedi surg, the nurse said well she's only get a lil over an
ounce & this is what they ordered.
Within an hour, Grace starting violently vommitting.
Her belly was too full!!
The picu team came up to try & eleviate the pressure..
she began dessating (her oxygen & heart rate started to drop).
I got called at 4 a.m., and then again at 5 a.m.
"You have to come now, she's very unpredicatably."
 
 
 
This was Tuesday evening..
 
What? Didn't I leave a smiling, happy baby that I held before I left?
She was watching TV with Mama.  We were listening to our songs. 
What in the hell happened??
 
I'm sad we are going thru this, yet AGAIN!
It's a repeat of April 2012.
 
 
Thankfully, her heart rate & oxygen stabalized.
She is in the PICU and on a ventiliator.
She is medically paralyzed & sedated (so she won't move & is comfortable)
She had to get a central line in her neck for all the connections for
the antibiotics, and the medicines.
She is on her belly, so to help her lungs clear out.
They initially thought an infection, maybe a belly leak from the new
g-tube, maybe an intestine blockage..
after 12 hours, they're saying maybe just aspirated pneumonia..
because she was coughing so much formula up, some got into her lungs.
I won't post a picture of what she looks like now, but you've just
gotten a description... you can imagine.
 
 
I had my prayer warriors out yesterday.. full of prayer!
They say prayer is so powerful..
We almost lost our baby.. (again!).. I'm not sure my faith can withhold
this.. I'll stick to the positive thoughts for Grace... and leave the praying
to the faithful and warriors.
 
 
 
What was suppossed to be preparation for taking her home
for the weekend, is now a setback.. and who knows when she's coming home.
 
 
I'm sad.  I'm bitter.
And I don't get it!
 
 
 
 
 
Thanks for keeping up..especially during this time.
Love,
pattie & gary, Grace & Max

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