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)