Sometimes I wonder why they even bother to send us home...

I apologize for the LONG time in between posts.

Things have been busy.

I try to update our FB Life with Lily page daily though

http://www.facebook.com/pages/Life-with-Lily/311949542190053 

So basically we had two blissful weeks at home.

And then we decided to feed her.

When I say decided to feed her I mean we were approved by all her drs to feed her...

And She LOVED the 1/2 oz of thickened formula she ate by mouth.

But within hours she began to not tolerate her feeds.

She started having diarrhea.

She lost all energy.

Then because her Fundo has failed she started vomiting.

I was hoping it was just a flu but the last time we tried to feed her by mouth

this EXACT same thing happened.

I tried everything I could to help her at home but she kept getting worse.

We had to take her in. 

Withing 10 minutes of being in the ER they were admitting her.

Then while we were sitting in the Er 

Lily just randomly passed out.

She was just sitting there then she was arching her back and went completely ridgid

her eyes rolled back and she lost consciousness.

This seemed similar to some of her earlier events but she didn't stop breathing.

I yelled for help and people came running.

They said it looked like a seizure.

We were admitted for stay #23 on Monday Nov 5th

 They did an EEG to see if there was any sign of seizure activity.

The EEG showed some slowing of her brain waves wich

"might or might-not mean it was a seizure"

They decided they wanted to just wait and see if she had another one...

Also,

The Drs didn't believe she 

"wasn't tolerating" and decided she just had a stomach bug.

(whatever happened to that note that was supposed to be in her chart that said to listen to mom? They told me 4 or 5 stays ago that they would listen to my instincts and have me be a part of the "team"...

I guess since she has a trach now all that's changed?)

They put her on IV fluids for a couple days then quickly raised her feeds back to her goal rate

 of 43ml an hour for 24 hours a day.

And by Thursday morning we were going home.

I Told them we would probably see them again in a day or two when she started not tolerating 

but they still believed it was a flu and she was fine now.

I let their optimism carry me home.

I mean their arguments made perfect sence.

(if I ignored her past history AND believed in CRAZY coincidences)

And It COULD have been just a flu...

She got home and slept for 18 hours straight.

(something that would NOT have been possible in the hospital so maybe

 we went home just for that reason)

Then she woke up and the vomiting started again...

It was just twice on friday morning and again in the afternoon.

The diarrhea was gone so she wasn't getting dehydrated 

and I really wanted her drs to look at her monday in their clinic

instead of have whatever Dr was on call making decisions based

 on their brief skimming of her HUGE file.

But On Sat Morning her stomach wasnt emptying AT ALL and the vomiting was 

so severe and she was vomiting out of her trach as well.

Vomiting out of her trach is a BAD sign it means its going into her airway.

So Saturday We went BACK to the hospital. 

For stay #24.

 And thats where we are now.

She is back on IV fluids and the idea is to slowly raise her feeds and see where she 

begins to stop tolerating and go from there.
And we just have to wait it out
and try to keep Lily occupied...

Shes not happy about being here again!

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.