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)

An interview with Lily

I got this idea from a friend (thanks Leah) and thought in light of Lily getting a Trach it was now or never, enjoy! Just so you know some of her answers towards the end are literally heart breaking.

 Q:What do Dinosaurs say?   A: "NO????"

 Q:What do cows say?           A:"Cow???"

 Q: But what do they SAY?   A: "aaaaaaaahhhhhhhhh moooooooooooooooo"

 Q: What do dogs say?          A: "fooff"

 Q: What do cats say?           A: "mooooowwwwwwwwww"

 Q: What do sheep say?        A: "heeep.... baaaaaaaaaaaaaaaaaaa"

 Q: What do birds say?         A: (does the sign for bird) and says "RAAAAAAAAARRR"

 Q: What do Dinosaurs say? A: (whispered) "roooooorrwwww"

    She gives me a hug and starts sucking her thumb

 Q: Are you all done talking? A: Shakes her head "No"

 Q:What else you you wanna say? A: "yeah"

 Q: If you could tell anyone anything at all what would you tell them? A:"Love Mommy I Love Mommy"

 Q: (wiping tears) You love Mommy thats what you wanna tell people? A: (jumping up and down excitedly with a HUGE smile) "yeah yeah yeah!!!!"

 Q: What else  would you tell people? A: "I happyyyyyyyyyy!"

      Lily:(makes an angry face) Q: Whats that face for? A: I so happy!!!!!!!!!!""Hah-hah-hah-hahahahaha"

 Q: If you could tell daddy something what would it be? A: (smiles micheviously) "NO!!"

 Q: No really what would you say to Daddy? A: " UMMMM, Daddy?? Bubbles? Bubbles???

 Q: If you could tell Grandma something what would it be? A: "Walk with ba-pa"

 Q: You want to walk with a backpack?  A: "yeah, wanna GO!"

 Q:If you could tell Grandpa something what would it be? A: "YO!"

 Q:If you yould tell Uncle Josh something What would you say? " A baby he tickled"

 Q: What???? A: "he tickle, he tickle ELMO! KICK!!!" (and she literally kicked the phone out of my hand... :/  Thanks for the great influence Josh...  )

 Q: What would you tell Uncle Kevan? A:"I tell him sumthing about Mommy"

 Q: What would you tell him about Mommy? A: "My mommy play wit toys"

 Q: What  would you tell Aunt Marnie?  A: "yeah!" "Wow" "I say Hi Ma-nie"

 Q: What would you tell Aunt Julie? A: "I a happy baby" (scowl face) "I do what I do....ummmm, its a thing" (really ??? where does she get this from???)

 Q: What would you tell Uncle Jacob? A: "YUPP!"....(silence)

 Q: Just yep?     A: "yeah"

 Q: What would you tell ALL your cousins?  A: "Buh-bye! " (waving)

 Q: What else would you tell your cousins? A: "buh-bye... see ya (Waving)...buh-bye  buh-bye........buh-bye!!"

 Q: What would you tell Aunt Jodi?   A: "Aunt Dodi I wat to play ok?" (scowls) I dont want my tubie, No tubie, I sorry aunt Jodi no more tubie"

(at this point my heart sunk and I am fighting back tears... I actually considered omitting this from this post, but its Lily's genuine feelings and that was kinda the purpose of this...)

 Q: What would you tell Aunt Rachel?   A: "I miss you roochelll" (holds up toy) "aaaannnnnd this is funny ha ha ha it so funny!"

 Q:What would you tell ALL your friends?   A: (playing with a toy) "Oh the fun that I am having, this is so fun" (yes this was word for word her grammar was perfect)

 Q:What would you tell all the nurses?  A: silence for a long time then..."You shouldn't touch me, You do it and...... this is so cool"(referring to her toy)

 Q: What would you tell all the doctors?  A: "No happy, they make me sleepy"

 Q: they make you sleepy?   A: "yeah, no sleepy!" Long pause "OOOOOOOOHHHHHHHHHH I so funny!!!!!!"

 Q: What your favorite toy? A: (with sass in her voice) "it my favorite toy!" (whatever "it" is we shall never know...)

She then lost interest in this "game" and wanted to watch "Melmo" 

I wrote this literally verbatim of what she said. I recorded the whole thing and played it back bit by bit to make sure I had her words just right. It amazes me how well she speaks! 

I am sorry for anyone I forgot or left out please know it was not intentional and I was going off of very little sleep and very high stress. Love you all!

The hardest decision of my life this far...

where to start...

 

Well, the GJ failed.

Completely.

We tried EVERYTHING

to make it work.

 

When the Drs ran out of ideas,

I told them a few things I thought they should try

 

We tried them all.

Nothing worked,

She isn't even tolerating pedialyte through the GJ now,

We had to stop using it COMPLETELY

She is only on TPN right now

(TPN is IV nutrition and only to be used as a last resort)

So remember that post back in August about how this GJ HAD to work?

(You can read it by clicking here)

 Well since it didn't work

We are faced with a choice

either Long term TPN at home

or

try going back to G tube feeds and trach her.

With Long term TPN:

Her port will be accessed 24/7

It almost guarantees a line infection,

(a line infection is extremely serious and often deadly)

most peoples gallbladders are shot in 14 weeks,

and they have liver failure within 1-4 years.

A person cannot live without a liver...

But with TPN she would get the necessary nutrition to survive and

probably wouldn't

need a trach,

or so we thought...

With a Trach:

she will have a tube sticking out of her throat,

She wont be able to speak unless she gets a special speaking valve

and there is NO guarantee that the speaking valve will work

and she wont qualify for one for the first month or so...

(so we wont hear her precious voice or cry or laugh at all)

She will be at a higher risk for lung infections.

She could have damage to her wind pipe.

She will have A LOT more medical equipment that goes everywhere with us

But with a trach

when her airway collapses

she wouldn't turn blue and pass out she could still breathe

She might be able to start eating food orally again

and we could get the GJ tube OUT of her and try to go back to a G.

She shouldn't develop brain damage from lack of air

She should be able to Fly again and go see the out of state Drs she needs to see...

With the two options we have We feel the OBVIOUS choice is the Trach.

Its really kinda sad when going with a trach is the option that will give the best quality of life

So after much prayer and research.

Lily is getting a Trach.

We meet with the surgeons tomorrow.

Then last night almost as if it was ANOTHER confirmation that we were doing the right thing

She had THREE spells.

Her airway collapsed,

She was trying to breath but couldn't

She didn't pass out

but  alarms were going off and her mouth was blue.

The thing was she was on TPN when they happened.

So OBVIOUSLY keeping her stomach empty wasn't going to stop these events

No these events weren't as bad as the others

 but they were bad enough.

I will update more as I learn more.

But I am sad to say my baby girl is getting a trach.

:'(