Friday, September 6, 2013

Breaking Radio Silence--Part 2

By Nell.

I wanted to include a few experiences from our hospital stay that meant a lot to us, and that we want Eva to remember when time dims her own memories of the situation.

Looking back on our week at Primary Children's, with a few nights of sleep under my belt, has given me the benefit of seeing many tender mercies I hadn't previously acknowledged as such.  I wanted to share a few of those here.  And although I still think I could sleep for 3 days straight if given the opportunity, I feel a bit more clear-headed about the situation as more time passes.

On Sunday morning (August 11th 2013) a kid who looked 10 years younger than me knocked on our door and invited us to church.  It was only a short 30 min. service, geared toward children.  Eva still felt pretty crappy and knowing that even in the best of circumstances church is a challenge for us, I was reluctant.  I didn't want the fight, didn't want the hassle, and I felt like I totally deserved a "pass" in this particular situation.  But as the minutes ticked on, my conscience was pricked enough that it nudged me to make the necessary arrangements with her med schedule to go.  Again the oddity of my current situation struck heavy as I found myself in the same room we had done volunteer training in, 10 years ago.  Bright-eyed and naive, I had no idea how precious this hospital would become to me as it would one day care for my sweet little Birdie.  Now I sat here in stinky 2-day-old clothes, next to my 6 year old in a wheelchair, waiting for the service, and tried not to feel too self conscious of my smell.

We watched many similar pairings enter the room after us.  It was humbling to see.  My heart ached
 to look around at the now-full room that was filled with ailing children, and their stale-clothed parents who were trying to keep it together just like me.  One boy was wheeled in with an incision from ear to ear, the gnarly gaps stapled together across his scalp.  Eva drew in a deep breath and whispered, "Oh Mommy!" and shook her head in sympathy.  I think she felt humbled too.

We sang, "How Firm a Foundation" as the opening song, and I lost my ability to speak when came the words,
  1. 2. In ev'ry condition--in sickness, in health,
    In poverty's vale or abounding in wealth,
    At home or abroad, on the land or the sea--
    As thy days may demand, as thy days may demand,
    As thy days may demand, so thy succor shall be.
  2. 3. Fear not, I am with thee; oh, be not dismayed,
    For I am thy God and will still give thee aid.
    I'll strengthen thee, help thee, and cause thee to stand,
    Upheld by my righteous, upheld by my righteous,
    Upheld by my righteous, omnipotent hand.
  3. 4. When through the deep waters I call thee to go,
    The rivers of sorrow shall not thee o'erflow,
    For I will be with thee, thy troubles to bless,
    And sanctify to thee, and sanctify to thee,
    And sanctify to thee thy deepest distress. 

They had a beautiful musical number by perhaps the best solo violinist I have ever heard.  Then a brief spiritual thought.  Eva was wincing half-way through, and I urged her to hold on for just a few more minutes.  I'm so glad we got to go.  It was a blessing to be able to feel a renewed affirmation that Heavenly Father knows each of these sick children and loves them, and above all, has a plan for them, whether it be here on earth or back in heaven with Him.  Not only that, but to be reminded that Heavenly Father knows me, and each of those heart-broken parents, and to remember that we are not alone in our suffering.

Mid-Monday morning, Eva was "just hungry and tragic" in her own words.  She was without food or drink in anticipation of an ultrasound.  Thankfully, the playroom, which would become our saving grace for our weeks stay, announced that they were having an art show on t.v.  Not wanting to miss out on a potential 15 minutes of fame, Eva asked to go down to the playroom for the show, so she could be on hospital t.v.  She was hilarious to watch.  They made fish tanks, and Eva quipped about how puffer fish "freak her out" at a table full of adults.  The family of rats nesting in the back of her hair were quite pronounced as she turned her head in profile.  It was a lovely diversion, and she charmed everyone there.

Images courtesy of Christopher Krause
Tuesday morning I was jolted from sleep by a frantic Eva.  It was 4 in the morning and two lab techs were trying to take blood for some labs.  Cotton-headed from being awakened so early, Eva heard the words "little poke," which by now had become her "trigger words" for terror.  She freaked out yelling and flailing, hitting and smacking anything near her.  I ran to the bed and tried to calm her thrashing arms and legs.  In the midst of the chaos, Eva yelled in desperation, "WAIT! Can we pray?!"  "Of course we can pray," I answered quickly, a bit ashamed I hadn't thought of it myself.  I said a quick prayer for bravery and strength for Eva, and she instantly calmed down.  The lab tech approached slowly, with much caution (for which I couldn't blame him).  Before proceeding, his demeanor changed momentarily, as though he was hanging up the "lab tech" hat and putting on another.  He leaned over, got nose to nose with Eva, and looking her straight in the eyes whispered, "Eva?  I know Heavenly Father is watching over you."  He smiled warmly and she nodded her consent for him to proceed.  Then just as quickly, he turned back into a lab tech and did what he needed to do.  Eva quickly eased back into sleep after the ordeal, and I collapsed back in bed, tears streaming down my cheeks, thankful for the testimony of my daughter in knowing Who to ask for help, and for the testimony of the lab tech, who stepped outside his profession long enough to reassure a scared little girl.

Tuesday was also the day of the liver biopsy and installation of the picc line.  Eva's anxiety level was through the roof, and the very mention of "going downstairs" sent her into a full-blown panic attack.  We made a plan with the child life specialist, Holly, wherein we would use distraction as much as possible to diffuse her.
Holly showed Eva that syringes make great squirters.  It was good to see her giggle and laugh again. 
Holly met us in our room with a giant armful of toys, books, and games when it was time to go for the procedure.  It was her idea for me to ride in the bed with Birdie which turned out to be inspired as Eva leapt out of bed and into my arms as soon as she figured out what time it was.  I carried her back to bed and held her tight as we began our journey downstairs.  Peppered with a million frantic questions, we stuck with our distraction game plan, because the more we told her, the more she panicked.  We decided that since she would be sedated, there was no point worrying her about something she wouldn't remember.  I busied her worried mind with trying to hit Daddy with the bed we were riding in.  Always a champion at slap-stick, Trev expertly fell over again and again as we rammed into him, allowing Bird to forget momentarily where we were heading.  As soon as she saw the anesthesiologist walk toward her panic set in again, even though the medicine was given through her IV.  She feared that she wasn't going to fall asleep the whole way, and that she would feel the "giant poke" which is how she referred to the liver biopsy.  After trying every toy and book to distract her, she was still freaking out, so I did the last thing I could think of.  I put my mouth close to her ear and started singing "Summertime," the lullaby that I used to sing to her when she was a baby.  She still occasionally asks for it when she's sick or has a hard time falling asleep.  I sang to my 6 year old the same way I sang to her when she was 6 months old, and ironically she looked just as frail and helpless today as she did back then.  By now the medicine was doing its job, and Eva began to relax.  They told us it was time to leave, but Eva still begged in slurred speech for me to stay and hold her.  Even though they told me she wouldn't remember any of this part, it tugged on my mother heart to walk away from her request.  It took so much energy to stay upbeat and happy and pulled together that now when faced with the first moments away from her since arriving at the hospital, I felt like curling up into a ball and having my own temper tantrum.

Back in her room, as she came out of sedation, Eva moaned and winced in pain.  Cuddling her in bed I told her I wished it could have been me going through all of this, rather than her.  Without a hint of malice she sighed and said, "Mama? I kind of wish it had been you too."  Made me smile.  "That's my girl," I thought to myself.

Post-op Eva feels pretty crappy
We didn't find out until late Wednesday that the preliminary pathology report said that the mass on her liver was an abscess, not a tumor.  This was the best possible news we were told, particularly in this situation.  Dr. Doby, who had quickly become Eva's favorite, looked relieved and said she was pleasantly surprised at the outcome.  This meant that we could go home the next day with IV antibiotics, probably for 6 weeks we were told, because they were unable to drain the abscess.

Walking out of the hospital and breathing what felt like free air for the first time in a week rejuvenated my spirit. I sat down in the car and melted into the seat as the tension slowly left, leaving in its wake a deflated me.  Tired and wilted, but with a smile.  I felt exhausted by the "emotional labor" of the experience, and as we drove away, the ripped down scaffolding that had been keeping me together left me a muddled mess of weepy jello.

Trev commented on the drive home that he was happy to finally stop feeling guilty.  No matter where he was, he felt like he was in the wrong place.  When he was at the hospital he felt like he should be at work, trying to make a paycheck for what was sure to be a mountain of hospital bills coming our way.  When he was at work, he felt like he should be home with the kids who perhaps needed at least one parent around.  Being at home, he worried about not being with us at the hospital.

As I considered this, I felt bad for poor Trev and how torn he felt all week.  I realized then that from the moment I climbed into bed with Eva, I felt like I was where I should be.  I never felt torn or guilty, which anyone who knows me well knows that I am very talented at hauling around excess guilt.  That in and of itself was a tender mercy for me.  Through it all we have felt buoyed up and supported by the many friends and family members who have expressed love and concern.  Hopefully it's all downhill from here.        



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