Tales of a Pediatric Nurse Practitioner - Part 1

author/source: Julie Hatch

Last night there was an ad on TV for St. Jude's Hospital for Children. Those ads are good at pulling hard on my heartstrings – every time I watch one I'm ready to reach for my checkbook. But they especially grab my attention because they bring me back to the years of working in Pediatric Intensive Care as a pediatric nurse practitioner. They were some of the best years of my nurse practitioner life. I worked with acutely ill kids with life-threatening infections, birth defects, trauma, drug overdoses, motor vehicle accidents, near-drownings – the list goes on. I also worked with kids similar to the ones you see on the ads for St. Jude's Hospital, with an illness that will be with them for life and kids with lives cut short because of their illness. I witnessed the challenges these children lived through, but also the miracles that happened every day. People would ask me, “How can you work with sick kids? Isn't it so sad?” My answer was always, “Kids have amazing attitudes.” Often their attitudes are far healthier than adults' attitudes. Their ability to bounce back and move on, both mentally and physically is nothing short of heroic.

In this St. Jude ad, I heard them say something that wasn't quite right. With a picture of a 3 ½-year-old girl, with all the signs of chemotherapy treatment, the narrator of the ad said “Three and a half-year-old Suzie is worried about her future, and she needs your help.” Yes, she needs our help, but I doubt that she is worried about her future. A 3 ½-year-old doesn't know how or why to worry about her future. Children that age have little concept of anticipating what will happen in a day, a week, a month, or a year from now. They naturally live in the moment. It is the parents who deserve sympathy for their child's future.

I once cared for a young boy diagnosed with neuroblastoma, a form of childhood cancer. Thirty years ago a child with this diagnosis had a life expectancy of 5 years, max. Andy was diagnosed at age 4 and died at age 7. Three times a week I went to Andy's home to maintain his central venous line. This was a large intravenous tube that went into his chest and was secured in a deep vein close to his heart. He had this 'lifeline' to deliver fluids, nutrition, and medications as needed. Andy's home was in a crime-ridden area of Manhattan in New York City, an unwelcoming and dangerous neighborhood. But once inside Andy's home, the energy of love and laughter that pervaded the home was palpable. Every day I went to Andy's home, his parents and two sisters were there, always rallying behind Andy. Most days Andy was full of energy and fun, playing practical jokes on me and his sisters. His spirit lit up the home. Other days when he wasn't feeling well, his family and I did all we could to make him crack a smile, forget about his pain for a little while, help him to enjoy the day. Andy lived each day without worrying about his future. He didn't lament over the fact that he would not graduate from high school, or experience his first kiss, or that he wouldn't grow up to follow in his father's footsteps to be an auto-mechanic. A six-year-old doesn't dwell on such things. In fact, he is mostly unaware of a future that will never come to be. Andy just knew life as it was – with a chronic illness, a central venous line coming out of his chest, a nurse coming to see him three times a week, and trips back and forth to the hospital.

All kids have the amazing gift of living in the moment. Kids with a chronic illness live in the moment, but they also live from one hospital admission to the next. It is exhausting both physically and mentally for the parents. For the kids, there is the initial fear about what will happen with each recurring doctor visit and hospital admission. Fear of the unknown is a big one. Fear of the anticipated needle sticks and painful procedures is another. But eventually, they adapt. As time passes, this life with a chronic illness is the only life they know. It is their life. Their friends are now the other kids that they meet in doctor's waiting rooms or in a hospital room. Their loving support comes from not only their families, but from the committed nurses and doctors who care for them, and the technicians and custodians who are often great entertainers and comedians.

Living with a chronic illness becomes their norm.  They find the small wins in their days, and they celebrate the joys in life that most healthy children do not have the opportunity to fully appreciate. When a child with a chronic illness passes on, they leave the people in their lives changed forever - changed by the child's love, innocence, attitude, determination, and incredible strength to handle what life has thrown at them. Caring for these children would make anybody a better person. By the time I turned 30, I had learned a lifetime's worth of compassion, gratitude, joy, and sorrow, and I saw a lifetime's worth of life and death.     

Charlie was another child with a chronic illness. He was seven years old with chronic renal failure – his kidneys didn't work at all, and for this reason, he required dialysis several times a week. Charlie would come to the Pediatric Intensive Care Unit for peritoneal dialysis which meant the dialysis was done through a tube in his belly. Liters of fluid would be put into his belly, growing his belly to three times its regular size, and then drained out over the course of several hours as a way to clear his body of the waste that his kidneys could not clear. He came with his mother while his five brothers and sisters were either at home or in school. This was his routine three, four sometimes five days a week for years. This was his life.  Rather than riding the school bus to school, he rode the New York subway to the upper east side hospital. He made the most of his life in and out of the hospital. The hospital staff was his second family. He loved his second family and they all loved him back.

Charlie's greatest wish was to meet Mr. Rogers. He was obsessed with Mr. Rogers. He watched him on TV every day of the week, whether he was in the hospital or at home. As Charlie's renal failure worsened, somebody from the hospital contacted Mr. Rogers and asked him to come to visit Charlie as a surprise. One day, Mr. Rogers appeared in Charlie's doorway of his intensive care room. The look of amazement, excitement, and disbelief on Andy's face when he saw Mr. Rogers walk into his room, was a sight to behold. He was ecstatic! The thirty minutes that Mr. Rogers stayed with Charlie were, I believe, one of the greatest highlights in Charlie's life. Charlie didn't ask for a trip to Disney or the latest video game or something else his family could not afford. A simple yet selfless act from Mr. Rogers made a lifelong impact on Charlie.

So back to St. Jude's. I feel for those kids, and even more so for their parents. I know a bit of what it's like for the nurses and doctors. Fulfilling, heartwarming, heart-wrenching, days of tears, and days of laughter. One thing I know is that those young children naturally know how to live and appreciate each day for what it is. Not always happy, often with pain or discomfort, but rarely a complaint about what they will be missing in their future.