“There’s nothing more we can do.”  Ominous words for parents of a small child to hear from her doctors.  But that’s what Kyla’s family was told about the time I first met her.  To be sure, they had done a lot for Kyla.  She had spent the first year and a half of her life in the PICU, struggling with a confounding combination of heart, lung, GI, and genetic problems.  Born with pump and plumbing problems that didn’t allow enough blood to get to her lungs, she had open heart surgery in infancy to redirect the flow.  A cascade of complications ensued leaving her at 18 months with a tracheostomy tube and ventilator, a feeding tube in her stomach, and such a precarious state of health that no one really expected her to survive.  The referral to Ranken Jordan was made as much out of frustration as hope.  She was too sick for any more surgery and way too sick to go home.  And staying in the ICU would have seemed almost like a form of punishment. 

That was almost five years ago.  She was usually sort of blue from too little oxygen and still having occasional near-death spells. On paper, she was very scary.  She was, at that time, the sickest patient we had ever taken care of up to that point.  She tested our expertise and our resolve by needing frequent trips back to the ICU whenever she had a setback.  But it was during the quiet periods, between the crises, that Ranken Jordan began to have an impact.  We got to know each other during those times.  We were able to do for her what we knew worked for less complicated kids:  more and more time up and out of bed, out of the nursery, and eventually out of the building.  Time to make up for all those weeks and months of lab tests and x-rays and operating rooms.  Time and space to learn some of the most basic skills from trained therapists, reinforced by nurses, child life therapists, volunteers, and family members.  She got music therapy, out trips, and movie nights.  And she got just enough medical attention to help her regain a healthy distrust of anyone with a stethoscope.  For months she would start to fuss whenever I came close with a flashlight to examine her chronically infected ears.  As she grew, this morphed into a playful routine of hiding her face and shaking her head in mock fear.  It was our greeting ritual from then on. 

She learned to scoot, then waddle, then walk and through sign language, proved she was smarter than anyone knew.  But she outlived her initial heart repair and started to decline.  She pushed the envelope and challenged her surgeons to adopt new strategies to keep pace with her recovery.  They hadn’t expected her to get bigger and stronger and it took some prodding to convince them her life was really just beginning.  A second, and later, a third surgery were needed to let her heart keep up with her, by then, active lifestyle.  All the while, play was her most important therapy.  Anywhere, anytime, with anyone.  She was making up for lost time.

I hadn’t seen Kyla for more than a year when our paths crossed at the hospital recently.  We both acted a bit shy, not knowing what the other was doing there.  I learned from her aunt that she had been in for an overnight sleep study.  The goal was to determine if she really still needed her ventilator.  While the study didn’t show she was able to completely give up the ventilator, it did prove she could spend some time without it.  But the really great news was how well she’s doing.  She attends afternoon kindergarten, and is truly impressing the staff with how bright she is.  She is speaking in full sentences through a special valve in her trach tube.  And she’s as playful as ever.

Literally hundreds of people have spent tens of thousands of hours caring for Kyla in her short life and all get to take some of the credit for her miraculous recovery.  The Ranken Jordan team who gave her a chance to become the person she is takes special pride in her inspiring story.  At the same time, it’s not uncommon for me to be asked, “Is it all worth it?”  And although the same question could be posed about each of our patients, we don’t often debate the value of spending so much time and energy on such complex children.  Having put children like Kyla through so much to save their lives, we have no choice but to do everything we can to give them their lives back. 

We can’t do anything less.