The Trach

Lily has a Trach.

It still feels a bit surreal.

When She is awake and active and looking at me with those big blue eyes

it seems to have already become a part of her,

almost natural.

I already am forgetting its there (kinda)

But...

When she is asleep or I get out of the room for a few minutes alone

It hits like a TON of bricks.

I don't know why getting the Trach has been so much harder (for me) than all the other surgeries combined.

For Lily, it seems to have been the quickest recovery,

with surprisingly the least amount of pain.

But for me this has tilted my world on its axis.

I don't know if its everything building up and the trach is just the straw that broke the camels back,

Or if its all the social stigmas that come with the trach,

 Or the reality of how much having a Trach will change our already medically complex lifestyle

Or if its just terrifying because its her airway and it is DANGEROUS.

Probably a mixture of all of the above.

But, 

I do know that this was the Right decision.

She is now having multiple airway closing events a day

and they are MUCH longer than ever before.

But because of the trach she doesn't turn blue or pass out.

She is able to keep breathing because the part of her airway that collapses is above where the trach is.

The Trach came at exactly the right moment. 

If we hadn't gotten the trach when we did, 

She would most likely be gone by now, 

or at best have some serious brain damage.

The Lord works in Miraculous ways 

and I know he is working miracles through My Lily girl.

And then also there is the Miracle of her voice.

She SPEAKS!

The Nurses and Drs are baffled.

I know its because of all the faith and prayers of those who love her.

Before Lily, the earliest a child had spoken after receiving a trach was 1 week.

Lily spoke after 12 hours.

She woke up the next morning after surgery looked up at a balloon and said

"ELMO!"

and I was too amazed to even cry but then she looked at me

and said

"Mom, Mommy, mommy"

And as I went to pick her up she looked at the 

nurses and Dr and pointed her finger at them

(as if they were in trouble)

and said 

"No, no, NO!"

Not only did she still have her voice she still

has her spunk!

This Picture was taken about 18 hours after surgery

And she is SMILING!!!

She was in the ICU for only 5 days after surgery instead of the standard 7

but 

She still wasn't tolerating feeds.

So being faced with TPN at home yet AGAIN...

We tried something a bit different.

Her Gi suggested injecting Botox into her pylorus

(the muscle at the bottom of her stomach)

It meant more anesthesia, but we had to try.

And so far it has WORKED!

She is finally at goal feeds.

No pain 

No shaking 

No screaming.

However, 

there are still complications.

The anesthesia sent her into a metobolic crisis.

Her heartrate soared to the 200's, her respirations tripled, she developed tremors

 and she spiked a fever. 

Slowly her respirations returned to normal

 and her fever subsided but her heart is still higher than it should be.

But all in all, it looks like she is pulling out of crisis mode...

Also,

When they went in to inject the botox.

they noticed her fundo was ripping out.

And once we got to goal feeds,

 she started refluxing her food and then aspirating it.

They way we know this is,

 her stomach contents are leaking out of her Trach.

This is bad news as it is a guaranteed  way to get a pneumonia.

So we are messing with the rate and volume of her feeds to see if we can find a happy medium

that will allow her to get her full nutrition/hydration needs but keep her stomach calm enough so she stops refluxing and subsequently aspirating.

And then yesterday her trach started bleeding again.

Just small amounts,

but it shouldn't be bleeding anymore.

I am afraid we are headed for yet another surgery to fix the Nissen Fundoplication.

But we will cross that bridge when we get to it.
We will be in the hospital
AT LEAST another week and,

As for now,

I am just so greatful that

the Trach is doing its job of keeping  her breathing and ALIVE.

This video is of Lily speaking with the trach and it also shows what her trach looks like 

without the mist collar attached 

(the blue tubing with the clear mask in the other pictures)

pictures from today

here's a couple pics from today

 the redness comes and goes with these random heat waves

shes been having

then she goes all blue/pale and mottled

and gets freezing as her temp drops...

Sometimes its only on her legs and hips and sometimes only her face

She only had 3 or 4 of these today and the one in the pic

didn't get bad at all, and that one wasn't followed by a cold spell...

The antibiotics seem to be working cause she seems to be feeling a little bit better

at least she feels good enough to throw her toys across the room...

any improvement is good...

Plus She made a HUGE breakthrough today she let

Rachel and Alicia HOLD HER!!!

It was a huge deal!!!!

YAY LILY!!!

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.