We all knew Deon. He was like our annoying little brother—we couldn’t change him, we couldn’t get rid of him, and he was always pushing our buttons. Still, he had a special place in our hearts. We were there for him when his family stopped coming to visit, when his mom had had enough and kicked him out of the house, and when he rejected his transplanted bowel.
Despite his constant presence on an adult transplant unit, he had the temperament of a ten-year-old. Of course, this was no fault of his; Deon fell victim to gun-violence when he was caught in a cross fire on the streets of D.C. at the age of eighteen. He sustained multiple gunshot wounds to the abdomen, one of which caused a large infarct, or loss of blood flow and tissue death, to his gut. In the process of getting to surgery, he lost so much blood that blood flow to his brain was diminished enough to cause a stroke, which contributed to his intellectual delays and personality changes. As a now legal adult, Deon was about to undergo a complete life change and be expected to manage his newly acquired health conditions with an intellectual disability.
Although he miraculously survived the injury, he lost so much of his bowel that he was not able to be nourished by eating. If he did eat, he would have dumping syndrome, which manifested as severe diarrhea that caused electrolyte imbalances and dehydration. For this reason, he was completely dependent on total parenteral nutrition (TPN), or nutrition administered directly to his blood stream. His dumping syndrome became so severe that he required hospitalization multiple times. Finally, the decision was made that Deon should permanently hold the order of nil per os (NPO), or nothing by mouth. Nothing—that means no eating, no candy, no drinks, no partaking in the central focus of parties and family functions. For this reason, Deon had an interesting relationship with food. He would watch Food Network all day, fantasizing about food as if it were his long-lost love.
During his long stays in the hospital we would be shocked to see that his electrolytes were off balance in the morning, or that he had diarrhea and vomiting, seemingly out of nowhere. We would check him for viruses, replace his electrolytes, change his TPN orders—all in vain. Come to find out, Deon convinced some friends to bring him fried chicken and pizza, succumbing to his intense cravings. Food became like a drug—he knew it was prohibited, he knew it would hurt afterwards, but he couldn’t stop thinking about it. Food gave him comfort, relief from suffering, even if only momentarily. We would reluctantly remind him, “Deon, you know you can’t eat, we can’t keep doing this, it is making you very sick,” but it continued.
Chronic visceral pain can be crippling. It’s the kind that makes you want to curl up in the fetal position and just stay there. Deon was in constant pain—this was his reality. But we had high expectations—we expected him to get up in the morning, go take a shower, go do something that nineteen-year-olds do, and not be so depressing. The pain was partially due to his condition, but also his noncompliance. We blamed him; we sighed, exasperated; we scolded. We gave him opioids for pain. He liked them because they made him feel good and forget about his troubles. It got to the point that he had a timer set on his phone and we knew to the minute when he would push his call bell, so we would go ahead and draw up the vial before he could call for “somethin’ for pain ‘n itchin’.”
Being dependent on TPN meant that he had to have a central venous catheter at all times in order to receive nutrition and fluids. As Deon was coming into his twenties, he saw his friends getting on with their lives. And he was just sick, all the time. He strove for independence; he wanted us to see that he was a man, and that he could do what he wanted when he wanted. Dragging an IV pole around for the twelve hours per day that he needed to be on TPN was irritating, it was much easier to just disconnect the tubing and go about his business reconnecting it when he was done doing whatever. It never seemed to occur to him that his central line was direct access to his blood stream for the little microbes on his hands and on the dirty port of his central line, no matter how many times we educated him. He came in so many times for central line infections that every time we saw his name on the tracking system we would look at each other and say sarcastically “hmm, wonder what he’s here with this time.”
Although he had not demonstrated stellar compliance, because of his age, he was placed on the bowel transplant list. During this time, his mother was supportive and hopeful for her son. A few months went by and Deon got his transplant. It went surprisingly well. He had an ileostomy for a few months, learned how to change and care for it, and then had his bowel and rectum reconnected. His gastric feeding tube remained, but he was off TPN, getting out, and even had a girlfriend. The question was whether he was consistently taking his medications. The first time he came in for rejection his mother expressed frustration— “I’ve been giving them to him, but I work…. He has to learn to do it himself!” He was treated with immunosuppression, responded well and went home. This went on every few months—rejection, hospital, home, repeat. The transplant barely lasted a year. We were counting the days, but it finally happened—full rejection. With a non-viable graft, Deon went to surgery and came back with his old scar reopened and stapled back together, his old feeding tube still dangling listlessly from his abdomen. He wasn’t a big talker, but by the way his face hung, you just knew he was at the bottom of a well. He had a glimpse of how his life could be and now he was back to square one. Back to pain, lusting over food, central lines, and watching life go by from the sidelines.
Depression ensued, and Deon’s old habits bubbled back up. We saw him even more often. Exasperated, his mother exclaimed, “I can’t get him off the couch. He don’t do anything and sometimes won’t even turn on the TPN.” Soon, Deon’s mother decided that it was time for her to move on and get her own life. She had had enough with him and wanted to move in with her new boyfriend making Deon homeless. At the hospital, where he came after this decision, he wanted the lights off, window shades down and wanted everything on his terms. “Eight” out of ten was always his pain score—we always asked even though we knew what he would say. He wanted his pain medication, the only thing that seemed to momentarily relieve his suffering.
Deon had a special relationship with one of the transplant nurse practitioners, Melanie. She listened to him, had known him the longest of anyone and he trusted her. When he was especially difficult, we would gather at her door and beg her to talk to him. She always would. When it was time to wean him off pain medication and send him home, wherever that was, he would complain, and Melanie would talk to him. Every time he didn’t want to go down to CT scan, or shower, or have his vital signs taken, Melanie would talk to him. We started to think he would make a ruckus just to get to talk to Melanie—the only one of us that he felt really understood him.
On one particularly difficult hospital admission, Deon was again febrile, needing a new central line, back on antibiotics. Yet, this time was different. He was acting out, or at least that is what we called it. The day he was my patient, he was screaming from his room saying he needed pain medication. When the doctors refused to increase it, thinking he was being his usual self and “crying wolf,” he felt he needed to make himself heard, so he came out to the hall in his boxers and vomited bright green bile onto the floor. That day was busy already and I didn’t have time to deal with Deon’s “tantrums.” I was stern and told him “you’re not getting any more pain medication, this needs to stop.” At rounds the attending transplant surgeon took a deep breath with his eyes closed, obviously perturbed, and told Deon there was nothing wrong with him, he was going to be discharged. Melanie spoke out at the last minute— “this is not like him; can we get a CT?” The attending reiterated— “he’s getting discharged, you know how this is going to go, he’ll be here for a month.” Melanie nodded. The day went on and Deon’s situation did not change. I was concerned, but feeling helpless. Towards the end of my shift I stopped by Melanie’s office and asked— “what are you gonna do about Deon?” Shaking her head, she said, “I’m ordering a CT scan. I know him, this is not like him.”
The next day I didn’t have Deon as my patient, but I stopped by the office to see what happened. “He has raging pancreatitis and might have some necrosis” Melanie told me. My heart sunk. I couldn’t believe it, or rather, didn’t want to. I had totally dismissed Deon’s symptoms. I just let him suffer. I was so embarrassed. His door was closed, so I knocked. Poking my head in, he was lying on his side in bed with his head facing the opposite direction. “Deon, I am so sorry I didn’t believe you yesterday.” He was silent for a few moments and said “ya’ll never believe me.” Ya’ll never believe me—I felt sick to my stomach.
Because of his age we often forgot about Deon’s intellectual deficits. It’s not that he was shy as much as he had difficulty expressing himself. Melanie knew him. She validated him and encouraged him. If we were lawyers, we might ask “why should we believe you Deon? What evidence do we have that this is any different from the other times you demanded pain medication?” If we were creditors we would say “request denied, too many previous inquiries.” But we were neither of those—we were nurses, and our job was to advocate for him and be his voice when he couldn’t speak for himself.
I have since left the hospital where I got to know Deon, but this memory always comes back to me. I failed Deon, but Melanie did not. I watched her step on toes to advocate for her patient. The memory of Deon lying on his side and the heaviness of the guilt that I felt fits tightly into my existential understanding of what nursing is. Yes, my job is to understand numbers and clinical pictures and vital signs. But perhaps more importantly, it is to be an informed advocate—this is what I say when people ask me to explain nursing. I am a liaison between the patient and the healthcare system, whose job is to care for and protect them on a level similar to that of a family member, acting in their best interest at all times. A trusting relationship is everything to nursing care. Patient concerns are legitimate until proven otherwise—and if they are not, the patient deserves an explanation and supportive care. Pigeonholing a sick person can be deadly; yet, I have seen it happen over and over. We make assumptions about them that affect their health and delay or withhold their care. Where I once would have shut down, that feeling of frustration now points me to two questions—"What am I missing?” and “How can I do better?”