Treat the Children Before Treating Their Diseases

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Underneath the tubes, wires, machines, monitors, wounds, and medications are kids who just want to be kids. Understanding personalities and fears is as much the job of medical professionals as understanding pathology.

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It was early in my nursing career, and my shift had just started. My 2 and 1/2 year-old patient's vital signs became more volatile as she sobbed in bed. A whirlwind of thoughts raced through my mind as the numbers on the cardiac monitor obnoxiously alarmed and flashed, indicating they were crossing dangerous limits. 

Was she in some sort of pain? Did one of her medical conditions suddenly become exacerbated? Just as I was about to consult the physician, I noticed that underneath the tears, my patient's hazel eyes were fixated on something. I curiously traced her gaze.

Within the hodgepodge of Disney, PBS, and Looney Tunes characters that resided in her crib, there lay a hint of red fur. I salvaged Elmo from the heap, straightened his extremities, and placed him into her arms. 

Sure enough, her vital signs returned to normal as her cries subsided. It was that simple. As she hugged her prized possession, she threw me a sideways glance of annoyance. Apparently, my heroic rescue did not outweigh my initial naivete. I apologized, and she reluctantly offered me a sticker from her sacred collection. Never mind that it was a sticker of a distorted, obese cow -- the message of forgiveness it relayed was far more important.

"Is The Little Mermaid too girly for you?" He nodded his head.

This girl suffered from Spinal Muscular Atrophy, a neuromuscular disease that renders her dependent on a ventilator to help her breathe and limits her ability to move anything but her arms. One would think that her cries were about something more critical. Perhaps a little frustration at the device inserted into her nose that sent pressure to her lungs. Or maybe some discomfort with the feeding tube that was surgically placed in her stomach. But her greatest grievance? The terrifying possibility that Elmo, while she was preoccupied with the mantras of Yo Gabba Gabba on Nick Junior, had been abducted from her bed.

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It was only after countless moments like these that I understood an aspect of pediatric nursing that sometimes gets lost amidst the chaos of my work environment. I am a nurse in a Pediatric Intensive Care Unit, and our patients, who range from newborns to 21 year-olds, have conditions that are life-threatening. Because we often see the most complex and extreme conditions, we have to remind ourselves of one of the fundamental principles of working with sick children: treat the child before you treat the disease. Before jumping to medical conclusions, it is imperative that nurses rule out the possible non-medical causes of a disruption in the patients status. These causes are essentially the same reasons a perfectly healthy child would get upset.

It's much easier said than done to apply this simple idea to such complicated cases. I once took care of an 11 year-old boy with cancer during the last few weeks of his life. He had a breathing tube placed through his mouth to the back of his throat, and lived off of a ventilator and multiple drips that maintained his heart function. Though he was also on sedatives and pain medication, he managed to stay awake and alert most of the time.

One day, his ventilator alarmed persistently, so I walked into the room to check. His eyes were widened in despair, and he shook his head furiously as he shifted in bed. It was unusual for him to move so much since his body was significantly weak. My immediate assumption was that he couldn't breathe because his tube was occluded. Not it. I then asked if he needed more pain medication. Not it. Diaper change? Not it. His blood pressure steadily climbed, and as I ran out of answers, I saw his frail fingers pointing towards the TV. Ariel, Flounder, and Sebastian were performing a number under the sea.

"Do you want me to change the movie? Is The Little Mermaid too girly for you?" I asked.

He nodded his head, and his entire body relaxed as though breathing a sigh of relief. The ventilator stopped beeping. His blood pressure returned to normal limits. I put on Shrek and all was well in his world. Never threaten the masculinity of an 11 year-old boy, I thought. Lesson learned.

Nor should one ever underestimate how clever the kids are. I'll always remember one 7 year-old girl who had an extensive surgery that left her entire abdomen covered in staples, drainage tubes, sutures, and other open wounds. The fourth day after her surgery, we successfully removed her breathing tube. The fifth day we decided to sit her up in bed to allow her lungs better expansion. I anticipated her feeling pain and discomfort, and kept a dose of morphine handy to use if necessary. About a minute into sitting up, she started shrieking and flailing her arms. I glanced at the other nurse helping me. Perhaps this was the moment to administer the medication.

It turns out that's not what she needed. In the middle of her tantrum, she stopped her sobbing short, quickly surveyed the room, and opened her mouth to speak. I was expecting something along the lines of "I can't do it anymore" or "It hurts too much." Instead?

"I might be able to do it if I can have a lollipop," she said matter-of-factly, eyeing me for a response.

By the end of her hospital stay, her room was full of toys from those who fell prey to her adorable bribery.

Our job is to understand their personalities and fears in addition to their diagnoses. 

She was one of the many critically ill children who reminded me that they were children before they became critically ill. Take, for example, the 6 month-old ex-premature baby with an open surgical wound. Her constant cry didn't cease after multiple doses of morphine. But she silenced immediately when a musical mobile was placed over her head. Or the 15 year-old girl with an autoimmune disease who refused to talk until prodded with a new nail polish color. There was also the 3 year-old patient whose body was in rejection after a transplant surgery. As she was passing away, she pleaded for her blankie and then held on to it for dear life -- literally. And I can't forget the 8 year-old boy with pneumonia who, while he was under anesthesia, demanded a pinky swear from the surgeon that she would not give him any shots. Little did the boy know she was placing a chest tube into his lung cavity, which was far more painful than the simple prick of a superficial shot.

But the surgeon took the oath (and technically abided by it). In her busy schedule, she made time to offer her finger and interlock it with the childs, all while keeping a straight face. Because she knows how important it is to address normal childhood issues before medically intervening for the abnormal. Underneath the tubes, wires, machines, monitors, wounds, and medications are kids who just want to be kids. Our job is to understand their personalities and fears in addition to their diagnoses. Coloring books, music, toys, cartoons, sports, movies and simply talking should be the first lines of treatment if possible. After years of experience and training my mind, I learned not to always jump to the worst conclusion, even though I'm in a place where the worst is a very likely possibility.

One of my recent patients was a baby girl who, by strange odds, also has Spinal Muscular Atrophy. As she sat in her crib, her lips began to quiver and her eyes looked around in confusion. Once her heart rate started to creep up, the light bulb went off. I inspected the area, and sure enough, the tickle-me monster lay suffocating beneath a blanket. I grabbed him and positioned him in front of her. Her symptoms were immediately relieved. 

Sometimes all they need is a therapeutic dose of Elmo -- no prescription necessary.

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Shazia Memon, RN, CCRN, is a pediatric critical care nurse in New York City.

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