Thursday, July 21, 2016

A Story About a Spine: Part 7

The night I brought Elisabeth home (for the second time) was difficult. While I understood that she would be experiencing severe post operative pain, this seemed different...this was something more.

I watched as she thrashed about and sweat poured from her head.

Then I prayed.

And afterwards, the answer came as clear as day. It was unlike anything I have ever experienced. The words just popped into my head:

Side effects.

I looked at Elisabeth and observed. I noticed her hand reach up and rub her nose. All week in the hospital we had assumed she had been trying to get the oxygen off...but there was no oxygen now...  Wait! It was never the oxygen, she was itchy! And the thrashing - like a person trying to escape their body - suddenly I realized her entire body was itchy!

I googled Oxycodone.

Itchy. Sweating. Elevated heart rate. Restlessness. And a million other side effects that she was probably feeling but couldn't express.

I just KNEW I was right and made the decision right then and there to give her strictly Tylenol. Oxycodone only stays in the body for four hours, so I knew I'd know by morning if I was right.

And here she was the next morning:

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I was overjoyed. 

Elisabeth was back!  

The torment she had endured the previous 10 days was lifted!

Of course I was a little frustrated, too. It was so obvious looking back on it. Then again, she had spent a week and a half in the hospital and not one nurse or doctor had thought it could be side effects. 

In reality, all the symptoms were being misinterpreted as signs of pain (the sweating, the elevated heart rate, etc.). So we would immediately give her more of the oxycodone, which unknowingly was making the situation ever worse! Oh, what a vicious cycle it was!

But in the end, a tender mercy
a direct answer to the prayer of a very tired and distraught mother.

How grateful I am. That moment was one I will never forget for as long as I live.

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[Comfort at last.]

Wednesday, July 20, 2016

A Story About a Spine: Part 6

I smiled
when I saw the new, updated sign on the garage door:

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The entire family was outside waiting and Donald [carefully] scooped up Elisabeth from her carseat and carried her in the house.

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They had 'For She's a Jolly Good Fellow' all cued up to play and as we walked in the door we all began to sing along. A joyful return for our special little queen.

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Elisabeth was once again returned to her royal throne [the couch!].

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Literally fifteen minutes after we arrived, Donald, Lorelai, and Elsa had to leave for Seattle; the regional track meet was that weekend and they were only waiting around long enough to greet us.

And just like last time, Lorelai sneaked a peek at Elisabeth's new back:

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Then they were off and it was Alexandra and I left at home to play nurse to Elisabeth.

At first things seemed relatively okay:

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But things started going downhill quickly.

She started thrashing about, sweat was pouring from her head, she couldn't sleep.

'Think, think, think,' I told myself.

I knew there had to be a solution. There had to be something causing this, some variable that I was missing.

As afternoon turned into night she became increasingly worse. I was tired, I was worried. There was no where left to turn. I knew the local hospital wouldn't take her, they had said so themselves. And driving back to Spokane just wasn't an option that late at night. Plus, I had just spent a week back there and really, they hadn't solved the problem.

I was on my own. I needed to figure it out.

 photo IMG-1468039257191-V_zpszpb5qmed.jpg 
[To help ease her discomfort, Alexandra created a makeshift hospital 
bed by using a bean bag to elevate the mattress.]

Sunday, July 17, 2016

A Story About a Spine: Part 5

Searching for Answers

We arrived back at the hospital the night of July 3rd and it was around 5 am on the 4th of July when she finally fell asleep - after almost two days of being awake and miserable.

This was not a fun way to spend Independence Day...but I knew it was the card we were dealt so we had to just make the most of it. 

  I tied a red and white ribbon in her hair while she slept. It was perfect.

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On the 5th we had exciting news: Donald and the girls were coming to visit! When they arrived Elisabeth actually woke up, which was amazing because mostly she was just sleeping due to sedation. And oh, what a difference having them there made! She seemed so content, so happy.

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Daddy missed his little girl:

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After spending some time with Lizzy, the big girls went down to the rec room and painted some posters to decorate her room:

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Elisabeth's ROOM

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Oh, what a difference a little bit of color makes! 
The doctors and nurses were all quite impressed.

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The next few days we were in somewhat of a holding pattern. She would sleep and sleep. Every once in a while she would wake up, but mostly she would sleep. I did get her hair detangled and combed, so that was good.

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Also, Elisabeth had a few visitors while she was there of the canine variety:

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But if sisters and dogs weren't there.  
Or if I wasn't pestering her by trying to detangle hair, she slept:

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Mostly I just took pictures of her.

On Wednesday afternoon they mentioned sending Elisabeth home in the morning. The problem I saw with that was that we had not resolved any of the issues, we had merely found a successful way to sedate her and I didn't feel that sending her home sedated was the best option. I suggested that we first let her wake up so we could gauge where exactly she was at. Everyone agreed and so on Thursday morning we stopped the sedation drugs.

It went as smoothly as we could hope. She woke up and seemed rather calm. By that night I thought, 'Yes, she is okay to take home' - though I was still haunted by what had happened the first time around.  

Why had she exhibited such strange behaviors? Why was she thrashing? Why couldn't she sleep? 

With still so many questions I agreed to take her home - a second time - on Friday.

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Up next: Part 6, The Homecoming, Take Two!

A Story About a Spine, Part 4


When we arrived home there was a sign welcoming us along with a sparkling clean house. That is just one of the gazillion things that I love about my family - when I am gone things do not fall apart. They rise to the occasion! 
(Elsa even took charge of making sure my flower baskets were watered.)

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The girls were thrilled to have their little sister home again. They hadn't seen Elisabeth in the hospital, so there were a lot of stored up hugs and kisses.

I absolutely adore the picture below...especially how Lorelai is taking her first peek at Elisabeth's 'new' back.

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And if you really want your heart to melt, look at these pictures:

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When Lorelai went over to whisper hello, Elisabeth gently lifted her hand and placed it on Lorelai's face. It was as if she were trying to say, "Why, there you are, sissy! I have missed you!."

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But then...things took a turn for the worse...

Elisabeth began thrashing and her hair was soaked in sweat. I kept thinking, "she's in pain, she's in pain". I religiously gave her the prescribed dose of oxycodone every four hours in hopes of bringing her relief, but it didn't make a difference. Throughout the afternoon and into the night she thrashed. At 3 in the morning I called the hospital and talked to a nurse who promised she would pass the message on to the doctor when he arrived. Come morning I waited and waited for a call, finally deciding at 9 am to call back. The physician instructed me to increase her dose by 1/3.

I did. And nothing improved. 

Elisabeth had been awake 24 hours and I was getting increasingly concerned. So I reached out to the local pediatrician who suggested giving her Benadryl in hopes that it would at least help her fall asleep.

Nope. Didn't work.

I called back to the hospital and at this point was a bit teary (I, too, had been awake well over 24 hours). "What do I do?" I asked. "She needs rest, her body needs rest."

The doctor told me to bring her back so that they could better manage her pain and evaluate the situation first hand. I scooped her up to put her in the car and discovered that the back of her shirt was soaked in blood. So we re-routed to the local emergency room. When I walked in they asked what was wrong and with a shaky voice I said, "She's falling apart." 

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The ER was able to bandage up her bloody incision and then I drove as fast as I could back to Spokane where they were awaiting our arrival.

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I was so glad to be back in the safety of that hospital room.

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Elisabeth was a mess. Her back was bleeding, her stats were all abnormal, she was sweating and thrashing and still unable to sleep.

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They gave her a medication to sedate her, but even so, the nurse and I stood at her bedside until the wee hours of the morning restraining her so that she didn't hurt herself. Already, her body was getting bruised from the thrashing.

At 3 am I began feeling dizzy - it had been nearly two days since I had slept - so the nurses took over and I went to get a few hours of sleep. When I woke I was informed that she kept thrashing until 5 am. Even with medication to sedate her, she had been unable to relax until finally her body gave in to fatigue. She, too, had been awake for close to two days.

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Up next: Part 5, Searching for Answers

Thursday, July 14, 2016

I Believe in Good

I have a confession. Lately, headlines don't phase me. They seem to come so frequently, these tragic events, that I have become numb to them.

Today...another tragedy. Dozens upon dozens upon dozens killed senselessly in Nice, France. 'Here we go again...', I thought.

I clicked on a 'Pray For Nice' hashtag and watched a very graphic video of someone walking through the carnage. It made me sick. Immediately I regretted viewing it, knowing that I would never be able to erase those images from my mind. But maybe that's not a bad thing, because that short video clip forced me to face reality. Indeed, it awakened me from a mental state of numbness to a place where I could feel again. And I felt disgusted, nauseous even.

I pondered, 'what now?' What do we do when we are being rained on so hard by the powers of evil? Is there any way to win? Is there any way to overcome it?

And then it hit me...

We fight it with good. Every small moment of joy and every bit of happiness shared is a triumph against evil. Amidst the hate we can keep finding beauty, keep clinging to hope, and keep choosing optimism. We can be gracious, loving, and charitable. And even when the world is loud and chaotic, we can immerse ourselves in moments of quiet and peace.

Good can win. Good will win.  

I believe in good.

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[There is an abundance of good in this world. I see it every day. 
Lorelai and Elisabeth, July 5, 2016]

A Story About a Spine: Part 3


A new straighter and longer back!

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I'll never forget that first moment seeing Elisabeth's new back. She looked so big! Her torso was now proportionate to her legs! Before, she had this tiny little body (since it was folded in half) and these long legs. Now her body matches itself. It is miraculous to look at!

Speaking of miraculous, look at the side by side of her before and after x-rays. She went from a 95 degree curve to 33 degrees. The surgeons told me they pushed her spine with as much force as they safely could, but it was so stiff that even after the fusion it has a significant curve (but we aren't complaining!). They also had to stretch her muscles and skin on the left side since they were so short before.

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After surgery Elisabeth had an epidural to help manage pain and we stayed in the hospital for four days. On day three her epidural was removed and we put her in her wheelchair. Keep in mind that the wheelchair was custom built to fit her previous, crooked back.

The picture below and to the left was taken the day before surgery. Notice where her ear falls against the headrest compared to the after picture. She gained a good 4 inches, I'd say!

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Obviously she needs a new chair - and one will be made - but in the mean time some modifications were made to her current chair. I confess that I cringed as an electric knife was taken to her $7700 wheelchair!

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Then, on July 2nd, we carefully traveled the two hours back to home so Elisabeth could finish healing in the comfort of her own bed.

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Up next: Part 4, Home and Back Again.

Tuesday, July 12, 2016

A Story About a Spine: Part 2

On June 27th Elisabeth and I traveled to Spokane to have her spine fused at  
Shriner's Hospital for Children. We spent the day in appointments, meeting with all the people who would be assisting in the days and weeks ahead.

That night in the hotel I remember feeling a bit of guilt as I watched her play innocently in the bed. She had no idea that her world was about to change; that although for the greater good, she was about to go through something very painful and difficult.

One thing I felt from the start:  
The hardest part will be that she won't understand what is happening or why.

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Finally the big day arrived. We woke early and I thoughtfully picked out a yellow ribbon to tie in Elisabeth's hair. Yellow is happy, yellow is optimistic - it seemed like the perfect choice. 

Then we were off...

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[En route to the hospital!]

Once we checked in, I changed Elisabeth into her hospital gown and snapped a few pictures of us together. I tried to soak up how she felt in my arms. I knew she would be a lot taller and stiff as a board afterwards. No more curling up into a tight ball. It was a little sad to me...but also exciting. It is strange how life can be opposite things at the same time.

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One final before shot:

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Then off to surgery she went.

While she was away I prepared her room. 
I brought a few things from home including a colorful quilt. 
(We don't do drab.)

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After that, there was nothing to do but wait. And think.

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I wore a little pacifier charm on my necklace that day in honor of Elisabeth. I held it in my hands and thought about the unique parenting experience I was having. You see, typically the goal is to teach children independence, to discover their passions, and to develop their talents. That's not the case with Elisabeth. Elisabeth is a forever-baby. The goal is simply to protect her, nurture her, and fill her world with joy and love.

Which brought us to that waiting room. I knew that she needed this surgery not only to improve her quality of life, but to preserve her life.

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[Moments after they brought her to her room. 
My first thought was 'how is she so beautiful after going through such major surgery?']

Up next: Part 3, The New Spine.

Monday, July 11, 2016

A Story About a Spine, Part 1

For years now we have been monitoring Elisabeth's spine as it 'fell over' due to neuromuscular scoliosis.

Neuromuscular scoliosis: 
 An irregular spinal curvature caused by disorders of the brain, spinal cord, and muscular system. Nerves and muscles are unable to maintain appropriate balance / alignment of the spine and trunk.

I was told that eventually we would need to fuse it, but it was important to wait as long as possible so that the internal organs could grow...because once her spine was fused there would be no room for expansion.

This year was that year. 

I took Elisabeth to the neurosurgeon in Spokane and an x-ray showed her spine at a 95 degree curve.

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[Front view of Elisabeth's spine at a 95 degree curve.]

 At age eight and a half we had waited as long as we could. Not only was the spine beginning to crush her lungs, but it was beginning to stiffen as well. Waiting even another year would mean the spine would be too stiff to correct.

"Now's the time to decide if you want to move forward with the surgery." 

Was there even an option? If we didn't opt for the fusion she would eventually lose lung function and die.

"Some families see it as a time to let go," I was told.

No, no, no. Not this family. 

Surgery was scheduled for June 28th.

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Up next: Part 2, Surgery Day

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