Undesirable Popularity (stay #21)

This is the Third LARGEST Children's hospital in the country.

There are 10 functioning paitent floors PACKED with paitents.

We have been admitted at least once ON 

EVERY SINGLE FLOOR.

Some floors 

(Like GI or Hem/Onc)

we have been on many many times.

Security guards know us

and Never ask to see our badges or wristbands.

They Open the arm to the main parking garage at sight of our car.

They never stop to ask why we are here like they do to  most of the other cars.

They know us.

Lily's name is known throughout the entire hospital.

When we get a new Dr that hasn't had her before,

(which is exceedingly rare now)

They always say they have been hearing all about her for months.

They have heard all about her cuteness, her headbands, her smiles, and how well she speaks,

They all know she has Mito, 

and that she is here A LOT.

Transport techs, cafeteria workers, and housekeeping all know us and we chat

as if we were just friends passing each other in the halls at church.

Nurses, Child Life specialists, and PCT's have become good friends and

are essential to keeping my sanity.

When word gets out that 

"LILY'S BACK!"

We have nurses and PCTs coming from all over to say hi

and to get their 

"Lily fix"

They write "Welcome Back"

On the board in our room

instead of just "welcome".

I dont have to explain what kind of things she likes to play with.

They just bring toys that they KNOW Lily LOVES

without me even asking now...

In just about anywhwere else that I could imagine being with Lily,

I would rather enjoy this kind of "popularity"  

But not here...

it just breaks my heart.

This is NOT what I would have wanted for my child.

Being known so well at a childrens hospital is NEVER good.

Dont get me wrong I am so greatful for the amazing people I have met,

and I am HUMBLED by how many many many people

love and care for my baby

(and for Me and Shaun for that matter)

but its all because she is sick.

She is seriously sick.

No she doesn't look it

(most of the time)

and yes there are kids who are sicker.

But she is seriously sick, nonetheless.

This all brings me to why we are here for our 21st hospital stay.

Gosh, I hate that sentence...

21 hospital admissions for my 19 month old daughter.

It seems unreal...

 

So, she hasn't been the same since the

trauma caused by placing the GJ.

 

She has nightmares.

She has flashbacks.

 I can't take her out in public without her crying the whole time.

Not to the store, not anywhere.

And she has been in pain.

 

Sunday the pain got much worse.

She was curled up in a ball, with her fists clenched,

shaking and crying.

But then she would fall asleep and wake up feeling better.

A few hours would go by and she would get fussy again.

She refused to stand up straight.

Mostly she just wanted to lay in my arms,

and hug her elmo.

 Pretty soon even tylenol wasn't easing her pain,

when she was sleeping her oxigen levels were too low.

I would give her a breathing treatment and they would rise for a couple hours,

but then drop again.

 so we took her to the ER.

 

They assessed her and immediately said they would be admitting her.

Within an hour of turning off her feeds,

she was much calmer.

Within 2 hours she was smiling.

within 3 she was laughing,

within 4 she was standing up straight.

 

If only feeding her WASN'T essential.

I am mad at Mito for making

such a natural and typically pleasurable thing such as eating ,

so hard and unpleasant and painful for my child.

I am more than just mad at Mito.

I am LIVID.

I wish it would just leave my baby alone.

Anyways.

The plan is to let Lilys bowels rest for 24 hours then slowly introduce feeds again.

 

Hopefully it will work...

 

I will update more as things progress...