The Human Spirit

**NotReady4PrimeTime, RN**

There have been many patients over the years who have taught me something, about nursing, about critical care, about myself, about the human spirit. Each one has touched me in some way and I will never forget them; hopefully, I won't forget the lessons they've taught me either. One little boy gave me insights into all four.

"Lincoln" came into my life as a toddler. Not quite two years old, he had taken a header down a short flight of carpeted stairs, picked himself and dusted himself off only to awaken from a nap later that day unable to move his legs. His dad said he felt foolish bringing him to the ER since he'd been completely normal before his nap, but he was frightened, and with good reason. Lincoln had a SCIWORA, a spinal cord injury without radiographic abnormality, and by the end of the day, he was no longer able to breathe without mechanical ventilation.

For several days, Lincoln teetered between stable and unstable, developing spinal shock and SIRS. He finally turned the corner and it was decided that his tracheostomy and gastrostomy would take place as soon as possible so that we could start working toward discharge. I never cared for him while he was in our PICU (although I can picture him quite clearly in Bed 7 by the windows), only becoming involved with him once he moved through the door into our pediatric extended care unit.

Our ECU at that time was a five-bed, crowded and institutional space. The philosophy of this unit was to be as homelike as possible, given the limitations of the space, and to educate the family in the child's care so that the child could eventually go home. The kids were up and dressed every day, they followed a routine that was as normal as possible, they spent time in the playroom (staffing permitting), the teacher came from the classroom every day for the school-aged kids to keep them current with their studies and family members were encouraged to come in and participate in their care from the earliest possible moment. Our two units were connected but separate; staffing was often a problem in the ECU so the ICU nurses would fill the gaps. I spent a lot of time there and got to know some of the families really well.

Lincoln occupied the bed closest to the door into the ICU. His family filled the shelves behind his bed with books, toys, and movies. Theirs was a complex social situation and there were challenges in setting up schedules for education and practice for his care. They had other priorities and often found themselves in conflict with the staff over broken promises and violated expectations. One concern they had was the suitability of their home for someone who would need a wheelchair and ventilator for life, and they made this a roadblock. They appealed to their church community for help and in due time the church raised a lot of money to build them a custom house, using volunteer labor. This project took a considerable time to come to fruition. It might have been simpler to renovate their existing house, but that never entered the equation.

While Lincoln's parents were sorting out their home situation, the extended care unit moved to another floor of the hospital and its name was changed to the Pediatric Special Care Unit. This new unit was a huge improvement over the old one; each child had his or her own "room" which was enclosed and separated on three sides, open to the center of the unit on the fourth. The decor was much more home-like and the place was very comfortable. Lincoln had the largest of the six rooms, the one with the border of cars and trucks just under the ceiling. His daddy used to drive transport trucks so they were a favorite of his. The room was filled with Tonka trucks, Hot Wheels, and posters of heavy equipment. He made it his mission to greet everyone who entered the unit since they had to walk past his room. But he talked a lot about how great it would be when he could go home.

Lincoln, in the meantime, was thriving in the SCU. He was essentially a tetraplegic, with only very limited movement below his clavicles. He was friendly and cheerful, even when he was tired and out of sorts. The only time he ever complained was when his autonomic dysreflexia emerged, causing his head to pound. His AD was life-threatening and always emergent, but he faced each episode with equanimity. As soon as the problem causing the AD episode was identified and resolved, he smile and say, "I feel great! Can we play pirates now?" He called his tracheal secretions "bugs" and suctioning his trach was "bug hunting". His favorite game was Sherwood Forest. He had seen the Disney movie Robin Hood many times and knew the dialogue by heart. The game involved him telling stories and the rest of us acting it out; his imagination was inspiring. He was Robin Hood, Mummy was Maid Marion and Daddy was the Sheriff. One day he and I were playing Sherwood Forest and I said to him that I didn't know who I was in the story. He cocked his head and studied me for a minute, then announced, "You're Clucky, of course!" I didn't know whether to be flattered or insulted... was I a nurturing, caring character, or a fat old hen? Whatever, from that day forward, that is what he called me.

I had several uncomfortable encounters with Lincoln's parents over the many months he was with us. They often said they'd be in to do AM or HS care (neither of them was working), they often told him they'd take him for walks off the unit or to visit the new house while it was being built, but just as often failed to follow through. Lincoln would be heartbroken, pleading that I call them and make them come in; as often as not, their phone went unanswered. They also arranged on many occasions to learn aspects of his care, such as catheterization, disimpaction, tracheal suctioning and CPR, then failed to show. The nursing staff was getting very frustrated and cool toward them and some were not able to conceal it from Lincoln. One day, when I was seconded to the ECU for four hours of the evening shift, his left arm looked red and swollen. I pointed this out to the charge nurse and we obtained an x-ray, to learn he had a spiral fracture of the humerus. His parents blamed me. I had not actually laid hands on him in weeks up until I helped with the x-ray, but somehow I had twisted this poor little guy's arm until it broke? His prolonged immobility had caused him to become osteopenic, and when our physician looked back at previous x-rays, he could see the break in films from earlier in the week. From that point on I found it very difficult to maintain any professionalism when it came to interacting with them but I managed.

After more than two and a half years in hospital, Lincoln was finally able to go home. The big day was so exciting for him he could hardly speak coherently. We had a huge party for him and everyone wished him well. The SCU was never the same after he left; we all missed him horribly. It seemed wrong to see someone else in "his" room, but as time passed, it seemed less wrong and just sad. Four months after he went home, I left that hospital to move to a new job in a new city. Two months after that I learned that he had died unexpectedly after a brief illness.

The lessons Lincoln taught me are things I might have learned from others, but I feel blessed to have learned them from him. He taught me that nursing is not just something I do with my hands and my mind, it's something I do with my heart. I learned that it is possible to separate a wonderful child from his less-than-wonderful parents and love him for himself. He taught me to be professional even when I feel like screaming. He taught me many things about spinal cord injuries and caring for people who have them, but he also taught me about courage. He never complained about the blow he'd been dealt with or about how limited his life had become. He was alternately silly, sweet, charming and goofy; he talked a mile a minute when he was happy about something and he was always happy about something. He taught me that happiness is within all of us, no matter our circumstances if we want it to be. We just have to let it be.