Again?!?

So here we are again!

Lily is back in the hospital and

She is having surprise emergency surgery tomorrow.

This is her 11th admission.

I am still a bit in shock it all kept happening so fast. 

This morning she woke up crying

(not a good sign)

She had fed the bed yet again...

but this time she was FREEZING and her legs were blue...

I put her in a warmish bath to warm her up like I always do

when she has fed the bed, but this time she didn't warm up.

I put her in our bed between Shaun and I and she finally started warming up after we massaged her legs and feet for a long time.

About an hour later she was ice cold on her arms and chest and was uncomfortably warm on her legs

She had weird splotches all over her legs and she had a temp rectally

but her head was really cold.

Her temp fluctuated but she had an appointment for tomorrow so 

I just put in a call to her doc to see if they wanted to see her today instead.

We were on our way to our first feeding therapy when

the doc called.

She said to skip FT and go straight to the ER.

So much for our first feeding therapy appointment..

We waited 8 months for this one so one more week wont hurt I guess...

The First doc we saw asked why we were even here cause

"she looks fine to him"

I told him how she "looks" is deceiving and he kinda rolled his eyes.

So I told him to call her doc who sent us there

And ask HER why we were here

He did.

He came back and said

The Doctor wanted some blood work then he was sure we could go home.

Because She didn't LOOK sick.

Within minutes of taking her blood the doctor came back in

He said her white count was EXTREMELY HIGH

and "He didn't see that coming cause she doesn't look sick"

I totally pulled my best I told you so look

and rolled my eyes...

Then reiterated (in an exasperated tone) that

how she "LOOKS" has nothing to do with how sick she is.

Yes it was rude I know, but he wasn't nice and kinda deserved it...

Anyways then her heart rate started to go high and her blood pressure rose

and her temp started going kinda crazy.

One minute she is bright red and sweating and the next she is way too cold

She started swelling all over for no reason

They sent her for a chest x ray to make sure her lungs were clear

AND GUESS WHAT

her port is back in her heart!!!!

how does that even happen??

Was it not fixed last time this happened?

They have to pull the whole thing tomorrow.

They also know she has a raging infection somewhere but they don't know where.

They are afraid its in her port...

that would be bad!

All I know is she is sick and they don't really know why

And she has to have surgery tomorrow

And Anesthesia is incredibly dangerous for kids with Mito

She has had bad reactions to it in the past.

she could really use some prayers

and if I'm being honest... so could I and Shaun too.