Hasbro Update Day 1 10:27pm

It feels like I'm writing from Maine.. we were just talking about how much

we have tried to protect Grace since we've been home & then suddenly this all happened.

And we know it wasn't 'suddenly', the doctors are saying it's been brewing a long time.

Since Grace has been home, she has never gotten a gas (bloodwork from her to identify how well she is breathing both in & out).. apparently, she has a very high (abnormally) C02 level.

Also her sodium was very high.  Her electrolytes are off, very unbalanced & the biggest reason

for this is all the gtube leakage she's been having.

How many times do we complain to you, to the doctor about her gtube leaking??

This is the frustrating part of our day!!

We got moved to a new room today.. we are in room 247.

Grace had a poop tonight, which is a good sign that her intestinal track is working well.

She had an ultrasound of her belly & kidneys, and both look good.

She also had a spinal tap done, and there was no sign of an infection.. so NO menginitis..

Great news with that spinal tap!!

The bloodwork from our GI doctor from Saturday morning, did come back

with an infection.  The puss that spilled out from the gtube was infact, positive for a bacterial

infection.  UGH!!!  She is on some pretty strong antibiotics, so of course it is going to kill the infection.

Just sucks that she has it.

Then the bloodwork that was taken at Hasbro yesterday, did come back with a staph

bacterial infection as well.  Usually it's a skin infection (perhaps the skin around the infected

gtube area??)  DEEP SIGH!!

Grace was on some blood pressure meds yesterday & was sedated.

Today, we walked in & she was completely off those meds.. and not sedated. But certainly, catching up on her sleep..she slept most of the day..opening her eyes just for a few minutes.

We are tired.  We are still aggravated.

We've received, once again, ALOT of support from family & friends

thru this blog.. and we THANK YOU.

Thank you for the prayers.  Thank you for the well wishes.

Thanks to Auntie Paula who left us dinner in the fridge..

Lasagna & Salad.. (just in case Ross you were wondering!! :)

Thanks to Madrinha & Joe who came out to visit Gracie today!

I'll update again tomorrow.

Love you guys, (truly!)

pattie & gary, Gracie & max