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.

:'(

Finding Joy in the Journey/ stay #22

Lily was home for a total of 7 days this time!!!

WOO HOO!

We made it a whole WEEK!!!

But as nice as it was to be home it was a bit of a tough week...

Lily was hurting and EXHAUSTED

She would have spurts of energy 

but then collapse in exhaustion and pain.

Shes been sleeping 18-20 hours a day...

Mostly, when she is awake. she has just been laying in my arms or sitting on her chair...

She just doesn't have any energy.

Then she started not tolerating her feeds again.

She would curl up in a ball shaking and screaming.

I called the Dr and we tried desperately to manage it from home...

We took her off formula and tried pedialyte

but it only worked for a few hours

and  then her blood sugar dropped.

So we went to 1/2 strength formula

It worked for a little while but her blood sugar didn't like it

We tried 3/4 strength and it didn't work at all.

Finally Monday morning she wasn't even tolerating 1/2 strength

And her blood sugar was all over the place 

And her heart rate kept jumping up to the 230's...

even while she was fast asleep...

We went to the ER

Where they ruled out all the easy fix things

(its never an easy fix with her)

and then they admitted her.

Her blood sugars have been all over the place since we got here

but they seemed to have finally found an IV mixture that is keeping them stable.

Also, as soon as we  stopped the feeds her pain stopped.

She hasn't had anything fed to her for about 36 hours now

and she is soooo much happier.

She is still exhausted.

But she isn't hurting.

Now the big problem is figuring out what to do.

The Doctors are out of ideas.

All 8 of them flat out said

They had NO IDEA what to do next.

It scares me...

How will we feed my child?

I must admit it is really unnerving when experienced Doctors

look you in the eyes and say

"I don't ever say this but I have no clue what to do."

I honestly lately have been at a loss for words.

I spend much more time staring at the screen grasping for the words

to explain whats going on than I do actually typing.

I just lately don't possess words for how I feel...

I have noticed my posts have become much more technical and factual.

Its just that I don't even know how to express how I feel about any of it.

I am in a constant state of mixed emotions.

I am so so sorrowful at seeing Lily suffer

and so so so extremely happy that she is alive, that she is my child.

I find pure joy in the simplest things.

I still laugh often.

I smile daily.

And almost always the smiles are genuine.

But my stomach is in a constant knot.

I am constantly waiting for the next thing to go wrong.

I miss being able to make plans and feel like I will actually be able to carry them out.

I hate CONSTANTLY canceling.

We live in a constant state of upheaval.

However, 

through the help of The Lord,

it has forced me to live in the present.

Even sitting here in the hospital

watching her sleeping peacefully 

listening to my favorite Pandora station on headphones and 

blogging therapeutically,

I feel Joy.

 Pure Joy.

That can only come through the Lords mercy.

If I focus to much on the future

I am almost frozen with fear,

If I focus on the past

I become a blubbering buffoon.

So I live here and now.

And I search out the little blisses

that God sends my way.

The sweet rhythmic breathing of my baby girl,

the happy beats of my favorite song,

 The comfort I feel wrapping around me as I pray.

The smiles and encouraging words of our favorite PCT's

The simple feeling of breathing deeply,

and the realization that 

I actually have EVERYTHING I ever wanted.

ALL I ever wanted was to have a LOVING husband,

who would stand by me through good and bad,

 to be a mom,

to have love reflected in my child's eyes,

To have a roof over our heads,

To have friends who help and support us during times of trial.

To be Free to worship according to the dictates of my own heart and soul.

I Prayed and prayed and prayed for all of this,

so how can I complain at the bumps in the road that come with it?

I have been TRULY blessed.

And with a greater understanding of sorrow comes an even greater understanding of Happiness.

We cannot know one without the other.

So, even though things are difficult 

I am eternally grateful for the life I have been blessed with.

Everyone has trials.

I am not exempt, nor do I expect to be.

And in this moment

this very moment 

with the light fading light casting colors onto the floor,

with every beat of my heart matching the rise and fall of Lily's chest...

I must admit

I feel JOY.

And it is All because of the tender Mercy of my Lord and Savior Jesus Christ.

 

 

PCH Give-a-thon They LOVE Lily!!

This picture in on three different websites.

Its on 98.7 the peaks page, 

KTAR.com

And KTARs facebook page

Its all because of 

KTARs give-a-thon for Phoenix Children's hospital

This picture is all over as well!

They spoke about Lily on the air.

The spoke about how she named her bear 

"E-E" and that she was so sweet with her bear!

They take more and more pictures every time they see her...

And she is on the video on KTARS page

I cant post it here but here is the link

http://ktar.com/59/1574914/KTARs-GiveAThon-for-Phoenix-Childrens-Hospital-Teddy-Bear-Express

As neat as it is to have Lily receiving so much attention.

Its also a bit heartbreaking.

I am glad that we are able to help raise money for our hospital...

But I just wish we were at home listening,

and thinking 

"I can't imagine what I would do if my kid was ever there"

Just like I used to think before Lily was born...

I  never in my wildest dreams thought 

My child's face would be part of a Children's hospital fundraiser...

But since we are here

We might as well make the most of it!

Plus Lily got an adorable bear that she LOVES

And having an event like this going on sure breaks up the monotony of 

they typical everyday of hospital life!

Plus, It NEVER gets old hearing how cute your kid is! :)

Undesirable Popularity (stay #21)

This is the Third LARGEST Children's hospital in the country.

There are 10 functioning paitent floors PACKED with paitents.

We have been admitted at least once ON 

EVERY SINGLE FLOOR.

Some floors 

(Like GI or Hem/Onc)

we have been on many many times.

Security guards know us

and Never ask to see our badges or wristbands.

They Open the arm to the main parking garage at sight of our car.

They never stop to ask why we are here like they do to  most of the other cars.

They know us.

Lily's name is known throughout the entire hospital.

When we get a new Dr that hasn't had her before,

(which is exceedingly rare now)

They always say they have been hearing all about her for months.

They have heard all about her cuteness, her headbands, her smiles, and how well she speaks,

They all know she has Mito, 

and that she is here A LOT.

Transport techs, cafeteria workers, and housekeeping all know us and we chat

as if we were just friends passing each other in the halls at church.

Nurses, Child Life specialists, and PCT's have become good friends and

are essential to keeping my sanity.

When word gets out that 

"LILY'S BACK!"

We have nurses and PCTs coming from all over to say hi

and to get their 

"Lily fix"

They write "Welcome Back"

On the board in our room

instead of just "welcome".

I dont have to explain what kind of things she likes to play with.

They just bring toys that they KNOW Lily LOVES

without me even asking now...

In just about anywhwere else that I could imagine being with Lily,

I would rather enjoy this kind of "popularity"  

But not here...

it just breaks my heart.

This is NOT what I would have wanted for my child.

Being known so well at a childrens hospital is NEVER good.

Dont get me wrong I am so greatful for the amazing people I have met,

and I am HUMBLED by how many many many people

love and care for my baby

(and for Me and Shaun for that matter)

but its all because she is sick.

She is seriously sick.

No she doesn't look it

(most of the time)

and yes there are kids who are sicker.

But she is seriously sick, nonetheless.

This all brings me to why we are here for our 21st hospital stay.

Gosh, I hate that sentence...

21 hospital admissions for my 19 month old daughter.

It seems unreal...

 

So, she hasn't been the same since the

trauma caused by placing the GJ.

 

She has nightmares.

She has flashbacks.

 I can't take her out in public without her crying the whole time.

Not to the store, not anywhere.

And she has been in pain.

 

Sunday the pain got much worse.

She was curled up in a ball, with her fists clenched,

shaking and crying.

But then she would fall asleep and wake up feeling better.

A few hours would go by and she would get fussy again.

She refused to stand up straight.

Mostly she just wanted to lay in my arms,

and hug her elmo.

 Pretty soon even tylenol wasn't easing her pain,

when she was sleeping her oxigen levels were too low.

I would give her a breathing treatment and they would rise for a couple hours,

but then drop again.

 so we took her to the ER.

 

They assessed her and immediately said they would be admitting her.

Within an hour of turning off her feeds,

she was much calmer.

Within 2 hours she was smiling.

within 3 she was laughing,

within 4 she was standing up straight.

 

If only feeding her WASN'T essential.

I am mad at Mito for making

such a natural and typically pleasurable thing such as eating ,

so hard and unpleasant and painful for my child.

I am more than just mad at Mito.

I am LIVID.

I wish it would just leave my baby alone.

Anyways.

The plan is to let Lilys bowels rest for 24 hours then slowly introduce feeds again.

 

Hopefully it will work...

 

I will update more as things progress...

 

They REALLY messed up this time...

Well Lilys tube change was a bit of a disaster.

I would be lying if I said I wasn't upset about it.

It should have been a simple quick 10 minute procedure.

Unfortunately, things went wrong...

That seems to happen a lot when Lily's health is involved...

What should have been a simple quick procedure turned into

45 minutes of torture for Lily,

leaving her writhing in pain and seriously traumatized.

When they tried to place her GJ

a couple of things happened.

First when they removed her G tube she bled A LOT,

which isn't unheard of, but isn't typical either.

Then when they tried to put the GJ tube in they realized that Lily's anatomy

was different in her bowels and instead of curving it takes a sharp right angle turn.

So that made placing it very difficult.

All of that couldn't be prevented and no one is to blame for any of that.

The part that went horribly wrong was

Lily was awake.

Like wide awake.

Now for a typical button change or a 

TYPICAL GJ change being awake is fine. 

there should only be minimal discomfort if any at all.

But this wasn't a typical button change, and 

Lily IS NOT a typical patient.

And where things went horribly wrong was instead of stopping

and realising because of her anatomy this was gonna be difficult 

and pulling out and putting her to sleep, 

They proceeded.

 They held her down for 45 minutes poking and prodding at her

until it finally slipped into place.

When they brought her to me her whole stomach was stained in blood she was dripping with sweat

And Shaking uncontrollably and

SCREAMING in pain.

And I mean SCREAMING.

I asked why she was hurting and

 they said she wasn't.

They said she was just traumatized.

JUST traumatized?!?!?

I asked why she was all bloody and they said 

"I don't know she just started bleeding when we took the tube out and tried to put the new one in"

I told them to give her some Tylenol for pain and they said 

no.

Then EVERYONE disappeared.

They left us in the recovery room

BY OURSELVES

for 30 minutes while Lily SCREAMED in pain.

We looked everywhere for someone to help us.

They were not to be found.

Until someone came to get us and take us back up to our room.

As soon as we got there I explained to the nurse what happened.

She looked up Lily's records about the procedure.

And THERE WERE NONE!

(By this time folks I was LIVID, like shaking, tears in my eyes, could hardly speak, angry

but I kept my calm exterior for Lily's sake. She had enough to worry about and didn't need an angry Mommy biting peoples heads off...

OOOHHH but I wanted to...)

I told our sweet nurse that Lily needed pain meds like pronto and she agreed.

The problem was it was the Dr who preformed the tube switch that had to order meds.

Well and hour and a half later that Dr came up to talk to me

(only because our AWESOME nurse DEMANDED it)

I calmly but firmly told her I was unhappy and extremely disappointed and confused with how things were handled

and that Lily needed pain meds NOW!!!

All I was asking for was Tylenol

Lily was still shaking uncontrollably and SCREAMING and CRYING

"OW OW OW"

The Dr saw this.

She had to ask me to repeat what I said because Lily was so loud.

And she still tried to  say she wasn't in pain.

I told her it didn't matter if SHE thought Lily was in pain or not

I told her this was our 20th hospital stay.

I have seen how my daughter reacts to trauma,

I have seen how she reacts to pain,

AND I have seen how she acts when it is BOTH trauma and pain.

And that in this case it was both.

I told her 

I AM THE PARENT AND I SAY SHE GETS MEDS,

IF I SAY SHE IS HURTING THEN SHE IS.

(It sure helps to know hospital policy and know that she was breaking policy by refusing pain meds)

She just said OK and left.

An hour and a half later

Lily was FINALLY approved for TYLENOL!

By this time the nurse was fighting back tears, and so was the head nurse.

I don't think I had any left.

I was kicking myself for taking the baby Tylenol out of my purse just 2 days ago.

If I had had any I would have given it to her in a moment.

The Tylenol ,when it finally came, calmed her and she stopped screaming enough to sleep.

But every 4 hours, like clockwork, her heart rate rises, she begins breathing fast and

wakes up crying "ow ow ow"

Today I finally convinced them to give her something a bit stronger, and that helped.

Her smile came back and she started playing softly and gingerly with her Elmo.

But still over 24 hours later she is still hurting SO bad.

Two nurses and I filed formal complaints.

Her normal Drs were either to mad to speak, or literally in tears when I told them what happened.

It turns out that during the 45 minutes that they were

messing around in her, her stoma closed

(stoma is the hole surgically place for the feeding tube to go in) 

Then they just forced it back open

and she felt it all

Her GI Dr said she basically had G tube surgery while she was awake to feel it all.
He WAS FURIOUS.

 They also caused damage to her intestines.

She is barely tolerating feeds at a rate of 15 ml an hour.

She has to be at least at 45ml and hour before she can go home.

If she is still hurting in the morning they will have to take more pictures and may have to remove the tube and do it again (Under anesthesia and WITH pain meds)
  or she might not even be able to have one at all...

so that's that I guess,

We just have to wait and hope the damage isn't severe and will correct itself quickly.

I don't really know what else to say

except thank you all for your thoughts and prayers!

Stay #20 at Hotel PCH

OK here's the latest update on our sweet Little Lily Bug.

The week after she was released from the last hospital stay 

we had a ton of follow up appointments

(9 in 5 days)

At her IVIG appointment her port looked really red and she had a slight fever

and was acting odd so they wouldn't access her port to give the IVIG

until we had been checked out at the ER .

We went to the ER and spent 3 hours waiting for test results 

and to make sure she didn't have an infection in her port

(which is potentially deadly in a person with a REGULAR immune system)

 and for once nothing was wrong.

:D

So we headed back over to her IVIG.

IVIG went well and no other complications arose until Friday Morning.

In my last post I wrote how they finally sent us home with a monitor to tell me if 

she stops breathing in her sleep.

Well its a good thing they did.

Friday morning around 6ish her alarm went off.

I ran in and she was grey and not breathing.

I touched her and she opened her eyes and took a big breath and cried.

It seemed like it wasn't a bad event at all

because she wasn't even blue yet,

just all over grey,

plus she was incredibly easy to pull out of it.

But she hasn't had one of these events while she was sleeping yet..

(at least not as far as I know) 

and it concerned me.

Luckily we had an appointment with her Pulmologist (lung/airway Dr)

that morning so we made the hour long drive to the dr.

She was in a great mood happily talking and singing to me the whole way.

We got to our appointment and went back into the room.

Lily was standing happily coloring when she slammed her crayon down on the 

table and started yelling in a terrified voice

"NO NO NO NO!" 

Her voice got raspy and she went ridged and fell straight as a board backwards into my arms.

She was gasping for breath.

I started to yell for help. 

She turned blue

stopped breathing and passed out.

She had felt it coming...

I don't know how, but she somehow knew it was gonna happen.

The Dr came running in and found her unconscious in my arms.

I put her down on the table

and let the Dr take over.

She woke back up and stared at nothing for about a minute then

burst into tears and cried for 20 minutes.

After actually seeing one of the events her Dr was even more concerned than before.

He sat down and we had to talk about what these events meant for Lily.

He had mentioned a couple of times before that he thought Lily might be a candidate for a Trach.

A basic picture of a Trach

I had always listened to what he said but thought he was 

overreacting and a Trach seems SO EXTREME.

Well, it is extreme,

Very extreme.

But these events are getting more frequent and are getting worse.

He now was/is fully suggesting a Trach for Lily.

And it just FELT WRONG.

My brain was scrambling to think of something we hadn't tried.

Anything at all.

Yes the idea of a trach scared me,

but so did the g tube originally, and the port and the Fundo etc...

But with those they felt right despite of my fear.

This seemed to hasty.

Then I remembered someone, I don't remember who,

(possibly my friend Brandis)

Had mentioned trying a GJ tube with continuous venting.

I mentioned it to her Dr and he paused for a moment and thought

then looked surprised and said

"Well that might just work, Its definitely worth a try."

Now why in the world would a feeding tube make any difference in weather lily can breathe or not?

Well, The results of the last bronchoscopy 

(lung scope)

Did show large amounts of stomach acids all throughout her airway and in her lungs.

And during her last EGD (Stomach scope) they witnessed her refluxing past her Fundo.

Somehow even though her Fundo is perfectly intact and almost too tight, 

She is still refluxing.

That leads us to believe

that it is still the stomach acids that are causing the

laryngospasms

So, If we remove anything and everything from the stomach,

That should stop these events.

So Today Lily is being admitted to the hospital for a GJ tube.

In a GJ feeding tube, her formula will be fed into her intestines

bypassing her stomach completely.

Since all her feeds will be going into her intestines we will then be draining her stomach

of all gastric acids 24/7.

If there is nothing in her stomach she cant reflux right?

 This is our last ditch effort to prevent a Trach.

A Trach means lung infections for an already immune compromised little girl.

It means no swimming, EVER.

It means possible permanent damage to her windpipe, and vocal chords.

If she does have another "event" after getting the GJ tube

we will have to trach her.

This GJ tube MUST to work.

It simply MUST work.

If it doesn't... well We will tackle that hurdle if it presents itself.

As for now, we are just getting a GJ tube.

I CAN do hard things with the help of The Lord.

I know The Lord is mindful of Lily. 

I know things will go according to his will.

He is in control and I take comfort in that.

This life was not meant to be a walk in the park.

It is the refiners fire.

We are being shaped into better people through every trial.

And our suffering will be but a moment

• Alma 33:11

  "11 And thou didst hear me because of mine afflictions and my sincerity; and it is because of thy Son that thou hast been thus merciful unto me, therefore I will cry unto thee in all mine afflictions, for in thee is my joy; for thou hast turned thy judgments away from me, because of thy Son."