September 16, 2012

A Chance to Thrive (Part II)

The Discharge
Nothing, not any experience or doctors’ descriptions, could have prepared me for seeing this little boy for the very first time.  Underneath all of the wires, tubes, probes and bandages, I could just barely catch a glimpse of the frail body lying limp in the hospital bed.  His yellow-hued eyes barely glanced at me listlessly as I greeted him in my sing-song voice that I tend to use when talking to babies.  He gave no reaction whatsoever when I attempted to stroke his stick-like arms and legs.  I now understood what “Failure to Thrive” looked like.  And I was instantly afraid.  What if he died before an organ became available?  What if he did get the transplant that he needed and healed physically, but remained emotionally damaged because of all the trauma and lack of nurture during the first year of his life?  What on earth had I just agreed to?

Over the next week or so, my husband and I met with his doctors and nurses daily, spending hours and hours at the hospital learning about his required care, practicing using all of his medical equipment, and being “tested” by the transplant team to make sure we were prepared with everything we would need to know once he left the hospital with us. 

Or rather, IF he could leave the hospital with us.  As it turns out, he was stuck in a tangled web of regulations, policies and procedures.  The social workers did not want to acknowledge us as his “official” foster parents until he was discharged from the hospital.  The doctors were reluctant to discharge him because he was so gravely ill.  The transplant organization adamantly refused to add him to the waiting list until he had “official” foster parents.  And every day that passed while the adults continued their negotiations, the baby became sicker and sicker.  It’s a sad state of affairs when government regulations preempt the doctors’ wisdom, but someone had to compromise and break the stalemate.  The doctors decided to go ahead and discharge their little patient so that he could have “official” foster parents and finally be added to the transplant waiting list.

The day of his discharge from the hospital filled the hospital staff with a combination of excitement, relief and loss.  The nurses considered themselves to be “mommies” to this child for whom they had tenderly cared for over a year, and would sorely miss seeing him every day when they arrived at work.  And yet they were thrilled to see him going home with someone who was sure to love him, someone who would finally give him a glimmer of hope for his future, a reason to live.

I don’t think “fear” is the right word to describe what I felt that day.  More like doubt and apprehension.  The discharge wasn’t just one moment, but was a long painstaking process that lasted several hours.  Each member of his medical team had last-minute instructions and details to explain.  There were follow-up appointments to schedule, home medical equipment and supplies to order and deliver, and paperwork to sign in triplicate.  And the medicine!  When I saw the paper grocery bag filled to the brim with dozens and dozens of medication, I could scarcely believe it!  I would be required to fill out five daily medicine administration records (MAR’s) to list them all!  As I was walking to the parking deck, I thought, “This is it.  This is my last chance to just get into my vehicle and drive away.”  Of course I didn’t.  I dutifully drove around to the discharge area, loaded the tiny boy into his car seat, filled the entire back of my SUV with his belongings, and drove towards home, knowing that my life would never be the same.

The Wait
“I’m sorry, but there’s nothing else we can do.  Our goal now is to make him as comfortable as possible until the end.”  While most people will live their entire lives without ever hearing those words, this was the second time in this child’s brief life that an almost identical verdict had been delivered.  However this time, there was an important difference, at least from my perspective.  This time, he wasn’t just a nameless, faceless heart-breaking story that I heard second-hand.  This time, he was my child!  

The scrawny little baby had been home with us for about two months by then.  In spite of – or maybe because of - the daily challenges of keeping him alive, the round-the-clock g-tube feedings, the charts and timers to keep track of all of his medication, the vigilant watch over every microscopic change in his symptoms; I now felt very protective and possessive of this little life in my care.   

My efforts were rewarded the first time I was able to elicit a half-smile from his parched lips.  The powerful moment when he weakly lifted his arms to me when he heard my voice.  The rejoicing at the twice-weekly doctor’s visits when the numbers on the scale moved gradually upwards.  All of those were signs that he hadn’t given up on life after all.  That somewhere inside that ailing body was a living, determined, hopeful soul trying to hang on.

But all of the care, nurture, positive thoughts and earnest prayers that I was humanly capable of offering were simply not enough to make a difference in his declining health.  I couldn’t ignore the fact that he was seriously ill.  Every day that went by without a new organ meant he became that much weaker, one day closer to not being strong enough to survive such a major surgery.  Now the doctors were honestly and compassionately preparing us to say good-bye to him.

Once again, I was deeply afraid.  “Failure to Thrive” looks and sounds bad on a medical record.  But experiencing it first-hand was even worse.  No longer was I thinking, “What if he dies?”  Every parent’s worst fears were being confirmed by the doctor’s grim prognosis.  I now asked myself, “How can I possibly prepare myself to face his death?”  And even more frightening was the question, “How can I possibly prepare my children?”  Even as I faced these terrifying questions, my family, friends and I continued to pray, asking God for a miracle in this child’s life.

Doesn’t God just have perfect timing?  The odds were stacked against him.  The doctors had once again exhausted all of their options.  Finally, finally, just when all hope was nearly extinguished, we received The Call we had been anxiously anticipating.  A perfectly-matched organ had just become available and would soon be on its way to the hospital.  Our prayers had been answered just in the nick of time!  

The next 24 hours were a whirlwind of admissions procedures, delays, consent forms, waiting, pre-op routines, more delays, coordinating surgeons’ schedules with operating rooms . . . and more waiting.  I had no idea that it was possible to experience boredom, frustration, anxiety, excitement, gratitude and sleep-deprivation all at the same time.  At last the moment we had been waiting for arrived . . . the anesthesiologists came into the room, ready to wheel him into the operating room.  I laid my hands on his one last time, and in spite of my self-consciousness at standing in the middle of a room full of people, I prayed out loud for him:  for the doctors’ skills, for a successful surgery, and for God’s protection on this little life.   He was then wheeled down the long hallway out of sight, and I headed to the lobby to begin the long wait.    

Amazingly, in that moment, I had perfect peace in my heart, knowing that whatever happened in the operating room down the hall, I knew that this was God’s opportunity to show His sovereignty.  Even if the worst happened, and this precious child was unable to survive the surgery, I had no regrets.  I knew that I had done everything I could possibly do, and that even if it was only for those few cherished months in my home and in my heart, the Lord had given him a chance to thrive.

(Please continue to   Part III)

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