Sunday, October 14, 2012

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)
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.

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.
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
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


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.

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...
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)


  1. Oh Alex, I can understand why it's so hard to accept Lily having a trach. There are a lot of life changes. But as for the stigma, I hope Lily doesn't have to deal with any of that. I just got done with a class for early childhood educators on inclusion. There's a huge push in early childhood that no child should feel they have a stigma attached to any condition they may have. This includes educating children and parents that everyone is unique and it is never bad. I honestly hope this will change the world to be more compassionate to everyone, no matter what. Lily is such a strong, gifted girl! It's apparent she won't let anything hold her back :-)

  2. The stigma was the first thing I thought of when you first mentioned the trach as well. I think Stacey has a point, though, that we grew up in a tainted "special ed" world, but that mentality is shifting to a much better and more open-minded one, and your family is part of that. Knowing Lily has helped me see past those ridiculous mindsets I was immersed in as a child, the ones that led me to shut down and simply think,"That person is beyond my comprehension, I won't even try." Lily breaks down mental barriers people didn't even know they had. You can't help but love her!