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.

 

 

Not sure what to make of all this...

So I have so many many emotions going through me right now

relief that we didn't have to have surgery

but frustration cause we still might have to,

Anger at the Jerk doctor that just came in here an made me feel 1 inch tall and an

Overwhelming desire to get that doctor to see and listen

or maybe JUST READ HER CHART!

Guilt for feeling that anger.

Fear, so so much fear for what lies ahead.

Physical and emotional exhaustion,

Sorrow, for my sweet daughter and her pain and suffering and fear

And OVERWHELMING GRATITUDE AND AWE

at the incredible out pouring of service, kindness and love.

So many many people have reached out to us.

I feel so undeserving.

I am amazed by how many people love and care about Lily.

Ashamed that I can't do more to help her and others.

Overpowering LOVE 

for 

My Savior and Redeemer Jesus Christ

And For My sweet daughter, and husband and family and friends.

Mostly I want to scream, cry and laugh.

I don't really know how I SHOULD feel,

but this is how I feel.

I also wanted to give an update.

The surgery was set for 11:30

It was pushed up to 9:30

then pushed back to 10:45

Then to 11:30

Finally Shaun told a nurse that SOMEONE needed to tell us 

WHAT WAS GOING ON???

So a surgeon came in and told us that there were 3 surgeons

each had a differing opinion about this surgery

and they were arguing about who was gonna do it

It basically all came down to whether 

her position in the x ray could effect the position of the cath in her heart.

So they did another x ray

It turns out it did...

kinda...

So they determined her heart wasn't in immediate danger from the port

so It was gonna stay,

one of the surgeons disagreed because they think she may be septic.

we should know by the morning if she is.

That would be very bad.

I am not thinking about that unless it actually happens.

so we are just back to waiting

and just to make things even more pleasant the doctor

requested an RSV test

which means we are on precautions.

She has no symptoms of RSV and the nurse called to tell him that

but he insisted...

So that's where we are...

more waiting...

Again?!?

So here we are again!

Lily is back in the hospital and

She is having surprise emergency surgery tomorrow.

This is her 11th admission.

I am still a bit in shock it all kept happening so fast. 

This morning she woke up crying

(not a good sign)

She had fed the bed yet again...

but this time she was FREEZING and her legs were blue...

I put her in a warmish bath to warm her up like I always do

when she has fed the bed, but this time she didn't warm up.

I put her in our bed between Shaun and I and she finally started warming up after we massaged her legs and feet for a long time.

About an hour later she was ice cold on her arms and chest and was uncomfortably warm on her legs

She had weird splotches all over her legs and she had a temp rectally

but her head was really cold.

Her temp fluctuated but she had an appointment for tomorrow so 

I just put in a call to her doc to see if they wanted to see her today instead.

We were on our way to our first feeding therapy when

the doc called.

She said to skip FT and go straight to the ER.

So much for our first feeding therapy appointment..

We waited 8 months for this one so one more week wont hurt I guess...

The First doc we saw asked why we were even here cause

"she looks fine to him"

I told him how she "looks" is deceiving and he kinda rolled his eyes.

So I told him to call her doc who sent us there

And ask HER why we were here

He did.

He came back and said

The Doctor wanted some blood work then he was sure we could go home.

Because She didn't LOOK sick.

Within minutes of taking her blood the doctor came back in

He said her white count was EXTREMELY HIGH

and "He didn't see that coming cause she doesn't look sick"

I totally pulled my best I told you so look

and rolled my eyes...

Then reiterated (in an exasperated tone) that

how she "LOOKS" has nothing to do with how sick she is.

Yes it was rude I know, but he wasn't nice and kinda deserved it...

Anyways then her heart rate started to go high and her blood pressure rose

and her temp started going kinda crazy.

One minute she is bright red and sweating and the next she is way too cold

She started swelling all over for no reason

They sent her for a chest x ray to make sure her lungs were clear

AND GUESS WHAT

her port is back in her heart!!!!

how does that even happen??

Was it not fixed last time this happened?

They have to pull the whole thing tomorrow.

They also know she has a raging infection somewhere but they don't know where.

They are afraid its in her port...

that would be bad!

All I know is she is sick and they don't really know why

And she has to have surgery tomorrow

And Anesthesia is incredibly dangerous for kids with Mito

She has had bad reactions to it in the past.

she could really use some prayers

and if I'm being honest... so could I and Shaun too.

Iv port adventures

Lily was fitted with an Iv port on Nov 1st. Here is what it looks like:





She needed it for her ivig every three weeks and for her frequent IVs for dehydration. Also her veins are oddly deep and they roll and collapse. So every blood draw, every stick required her being held down for 45 min being stuck in every vein they could find until they found one that wouldn't collapse. It was traumatic for everyone involved.  The last iv she was given before her port surgery was the worst. I watched as three nurses held her down and stuck her over and over and over and over. she screamed and fought with every ounce of her strength. she had just started saying mama that week and screamed "mama mama" until she lost her voice. After they were done i picked her up and she just sunk into my arms, and stared at nothing. She barely took notice of toys, of people passing. She just stared. For a day and a half when she wasn't sleeping she was staring into nothing. Any question we had about weather the port  was a good idea had been settled. So she had the surgery. She was already going under for a g tube and a muscle biopsy so adding a port wasn't too big of a deal.However the port comes with complications. For every fever she has to be hospitalized for at least 48 hours to make sure the port isn't sending an infection into her heart.

 Th red arrow is pointing to the bump of the port that is visible just under the skin the purple arrow is pointing to the catheter that runs up her vein. This was taken a few hours after surgery.

 My finger is pointing to what her port looks like now that the swelling is gone.

 in order to place it they also had to put a small slit in her neck.

this is what the port looks like when its accessed. they use a special 1/2 inch Huber non boring needle.

  And then there was the unexpected complication. She had a staph infection that wouldn't go away. On DEC. 8th she spiked a high fever. They admitted her for iv antibiotics and to be monitored. with in 12 hours her fever was gone...
I had noticed the few weeks previous she kept grabbing her chest and moaning. She was more fussy than normal and would sometimes even fall over screaming and grabbing her chest. I told the ER doc and they didn't care. I told the admitting doc, he didn't care. I told her first day nurse...she didn't care. We finally got an awesome nurse the day they were gonna release Lily from the hospital. I told her and she said she had noticed it earlier when she was watching her so i could take a bathroom break. Then Lily did it again in front of her.

You can see the pain in her eyes in the pic as she holds her chest. The Nurse called the resident doc (who is AWESOME! she hasn't been a doctor long enough to get jaded and stop caring as much...). She ordered an x-ray. The x-ray showed the cath from the port had slipped far into her heart. She needed surgery. They booked the OR for the next possible opening. The moved us down to the cardiac ward to monitor her heart. They said they wouldn't know if any damage had been done until they got in there. There was a possibility it had fused to her heart. We asked a friend to come that night to help give her a blessing. The blessing she was given brought so much peace. The spirit was so strong. I knew she'd be fine and things would go smoothly. Early the next morning they sent her off to surgery. It went smoothly and quickly. The surgeon was able to go in through the old slit in her neck and correct it from there. She was monitored for another 24 hours to make sure her heart was ok and then sent home. We were so blessed. It could have been so so much worse. at the very least, the surgeon said he was sure she would need a whole new port. He said he didn't know how she got so "lucky". It wasn't Luck, it was the blessing. The Lord heard our prayers and granted peace and healing. I give Thanks to My Heavenly Father for blessing her that day and every day. He knows our desires and answers our prayers. I am so so so grateful!