Hopefully no more ER..

Here's hoping we are on the mend.

So far I am not sick.

Andrew is now terribly aching.

Aidan's backside is slowing down.

His hunger hasn't quite gotten back yet.

D has been gagging

but seems almost like he now has drainage.

??

His eczema is back in full force too.

Trying to figure that out.

He does OK then screams in pain.

He was screaming over an hour this afternoon.

He woke up and screamed.

He finally fell back to sleep on me

in the our bathroom.

He would gag

but not get sick. :(

Logan...

Oh Logan...

Yeah.

I couldn't get him to eat

and

barely drink.

Then he started throwing up again.

We gave him some Zofran

and

I called the Pediatrician since

I was supposed to touch base with them.

(they were closed anyway yesterday.)

I explained everything to the front desk

she said the Nurse would call back.

And here we go...

She called back a while later.

I explained it all again.

She remembered us...

Yes...remembers having to take him in 3 times since December.

She remembers him coming in after my first surgery

and

and before and after the second..

Yeah...

She also has a son with Asperberger's.

So she gets some of our difficulties.

So, I explained Thursday

and

how we tried to keep him home

and

then when we had no choice.

I recounted what

all I relayed to the Nurses, PA and the MD.

I mentioned the sugar issue at the ER

and

it again yesterday

when I had to force feed him

juice to bring it up

while he screamed

and

fought

and

then finally started to wake up.

I mentioned the metabolic issues the Geneticist wants

to look into

and

she feels there might be even more too that we will learn.

Yes...so the Nurse Stephanie

pulled the Doctor there

and

she is on call tomorrow too.

Then she called me back

because the sugar issue is very concerning.

SOOOOOOOO....

Yeah...

Again the mentioned any doubt we have bring him back to the ER

BUT

here's the catch...

The Dr. said we may want to take him to

Duke Children's

instead of Wake Med

because I HAVE to call the

Geneticist

first thing Monday to

let her know about the sugar issue.

Here I figured we would mention it at the next appointment.

I bet we'll be heading there sooner now...just a hunch.

We had to spend all afternoon forcing him

to drink juice or full strength gatorade.

Yes..because he can't do food dye

so we can't do electrolyte

solutions

and

they won't want him to have anything watered down.

They want to keep his sugar up

since he still isn't eating.

His lips were getting dry

but

he was still

have wet enough diapers.

So yes, we had to force the drink

via syringe because he wouldn't

take it.

They said if he started to be hard to wake up

take him back right away

and again

reiterated

we may want to choose Duke

since all of his Genetics

information would be

available for him.

They said if something just feels wrong to us

we need to bring him in too

especially since

he can't tell us how he feels

or

if the Zofran did not stop the vomit.

Thankfully it stopped.

For now.

We are hoping he finally hits the mend.

He always gets hit so much worse than everyone else.

This we know

and

always mention again

because it goes

with the possible metabolic issues

and

possibly others issues.

Yup.

So... there we are.

My Mom came and helped today.

I have a ton of adrenaline flying through me.

I did a lot I wasn't supposed to do

but

Poor Andrew was totally out of commission.

The Kids needed stuff

and

we got to the point

Mom was cleaning up Logan's puke

and

catching it

while I was cleaning puke

and

stains from the carpets,

cleaning puke off

the toys.

I would check on Andrew

and

continually keep everything

washing

and

constantly

putting bleach all over the bathrooms.

It has to stop soon.

PLEASE DEAR LORD!!

Then I think perhaps the Lord is just challenging us to make

sure we keep the mindset we need with all of this.

The Determination

and

Will Power.

A reason why I am pushing myself through everything

I did crash hard

but

after a nap

I was able to push the adrenaline again.

I am spraying

50% bleach on as much as I can.

All bathrooms,

emptying trash,

moving laundry

keep clean sheets,

scrubbing toys,

keeping sanitized dishes

etc.

Anything I can think of.

Perhaps that is what it is.

I told Andrew once everyone recovers

I probably will hit my low

but

will do my best to maintain until everyone gets better.

I expressed again

I want to go to Boot Camp,

I want to go run,

I want to hit something

Heck, if we had a sledge hammer

I may just find a wall to tear down in the house.

I am determined, we will recover

and

I will continue to kick

any more astrycytoma's backsides as needed.

I only can think we are just being challenged to keep that mind frame.

There is so much I want to say but over time I will probably touch all bases.

I don't want to leave a giant novel for everyone.

**There is a new tab on our page that will link to our Team

for The Duke Brain Tumor Center

fund raising and 5K.

Perhaps I will recover and get to run it. :)

Right?!