Lila's port procedure went well yesterday.
They were running a bit behind on the surgery schedule
so we sat at the hospital and waited for a few hours.
The actual procedure took less than an hour
and there were no complications.
Lila waited very patiently.
Seriously, she has WAYYYY more patience
than her parents!
She's prepping her doll for surgery.
How about that wild hospital gown?
It went so well with her striped leggings.
I walked Lila back to the operating room.
She was laughing at my shoe covers and mask.
Love that kid.
The anesthesiologist had told Lila that she
could bring the iPhone back with her
so she was watching a video
when we got into the OR.
Of course, she didn't want to give it up.
I told her that I was going to count to 3 and
take the phone
so she gave it up when I got to 3.
Then she didn't want to lay down
and put the mask on
so the anesthesiologist asked me
if I could do my 1,2, 3 trick again. : )
I did and she laid down.
And then you get to the worst part when
you are waiting for her to go to sleep.
First her body relaxes and then
the weird breathing thing starts.
Everyone is trying to reassure you
that this is normal, which you already know.
It ain't your first rodeo.
But it still sucks because it just doesn't look natural
and it's all scary and you feel like you can't breathe
but you have to be strong and at least wait
until you get out into the hallway to cry.
And I did.
I held it in until I reached the hallway
then got rid of my gown and other stuff
with tears streaming down my cheeks.
I stopped in the bathroom to wipe my face
so I could look like a strong mama
when I walked into the family waiting room.
Thankfully the procedure went smoothly
and before we knew it they were calling
for Lila Nargi's parents.
Both names mispronounced.
Makes me laugh every time.
When we got back into the recovery room
we were surprised to see that Lila's face
was all red and splotchy.
I guess she had a reaction to the tape
that they used on her face~ to tape her eyes closed, etc. Thankfully it went away after a couple of hours.
It seemed like she was in a lot of pain
so they gave her a pain reliever/narcotic.
This upset her stomach so we ended up
hanging out at the hospital for quite a while
until she felt better.
She was doing this weird coughing thing
and I could tell she was trying not to throw up.
She finally agreed to eat a purple popsicle
and they let us take her home.
Later last night when it was time for bed
I gave her more of the pain reliever/narcotic
but I gave it to her with a snack and she went to bed
directly after taking it. I was laying down with her
and she started doing that weird coughing thing again.
I was pretty sure she was going to throw up
in her bed and possibly on me.
I asked her if she was ok and she said,
"Oh, yes, mom.
I just coughing wike in the Barbie movie."
I seriously think she does this stuff just to mess with me.
Today went ok- she is pretty freaked out about the port.
It is covered with a bandage and she
doesn't want anyone to get near it.
She doesn't even want you to look at it.
She gets the remainder of her IVIG treatment tomorrow
and they will be taking the bandage off to access the port.
I started thinking about how much she is going
to freak out so we watched some youtube videos
of people getting treatments for various things
through their ports.
At first she didn't even want to look but then
she became more interested when I started explaining everything to her.
She seemed to understand.
We'll see how tomorrow goes!
We'll watch a video right before we leave-
hopefully that will help!
She is on "restricted activity" for two weeks.
She isn't supposed to take a bath,
swim, play ball, dance, etc.
Yeah, right. The kid is raring to go.
After keeping her inside most of the day,
we went outside this afternoon.
She had her very first ice cream cone ever-
thanks to the gluten free cones I found at Whole Foods.
I know, you think she is deprived.
She's had ice cream before!!
And when she requests ice cream she always asks for "chocolate and vanilla twist in a cup."
So.... she's only been deprived of the cone.
She loved it!!
Here she is enjoying her ice cream cone,
wearing her hospital bracelets like badges of honor.
She doesn't want to take them off!
Lexi was begging for ice cream even though
she can't stand eating anything cold.
She just doesn't want to be left out of anything.
Can't blame her!
She settled for a piece of the cone.
After begging to do every activity she is restricted from
Lila finally agreed to a ride on her bike.
She doesn't ever fall off of it
and doesn't have to extend her arm to ride it,
so we figured it was ok!
Tomorrow is another day.
Hoping and praying that everything
goes smoothly when they access her port for treatment.
We are so thankful for all of the prayers and well wishes.
Our girl is surrounded with so much love!