I remember the first patient that I liked that died. Really liked. James was a 16 year old boy with Cystic Fibrosis. He was surly, uncooperative, and mouthy. He never wanted to take any medicines or do any therapy. A lot of my co-workers would rather not have him as a patient, but whenever he was on the unit, I volunteered to take care of him.
One day, James said “you think I am sexy. that’s why you always want to have me.’ I replied ‘1. You’re jailbait, little boy. 2. You’re scrawny, and you can’t even cough without getting short of breath. Let’s do your breathing treatments and CPT.’ And he would let me. Every.Single. Time. For whatever reason, he responded to me not treating him like he was sick. I always give him a choice–“do this…you know what your other options are–get intubated, put on a ventilator, and we can suck the goo out of your lungs all day long or do the CPT, take the treatments, and cough.” He always chose to take the treatments. He knew that if he ever went on the ventilator chances of coming off were not good.
One day, he asked me if it hurt…does being on the ventilator hurt?…does being intubated hurt? My answer was truthful–whether it does or doesn’t, I can’t say because I’ve never been in that situation, but I do know you would be on pain meds and meds that will make you not remember. He said OK then asked if I wanted to play chair basketball with him. And we did. Because that’s what you do in peds.
The next day was the Duke-UNC basketball game [James was a big Duke fan]. He asked me if I would watch it with him, and I said I would with the understanding that if I got paged, I’d have to go. He said OK.
I got through first rounds, saving him for last, and we did his therapies while watching the game. Duke won and after the game he told me he was ready to be intubated because it was just too much of a struggle to breathe. I asked him if he was sure and he said he was. I found the resident and told him what James had said. He went to talk to him and James called his parents. They came and it was decided that they he would be transferred to PICU and started on the ventilator later that night.
I stopped by to see him later that night. He was still awake, had his blue, fuzzy Blue Devils blanket on his bed. James said, “I know I can be a pain in the ass. I know I’m probably not going to survive this, but thank you for not treating me like a kid.” What do you say to that? ‘You’re welcome’. My pager went off and I was saved by the bell. ‘I gotta run but you know you’re awesome, right?’ In typical teenage fashion he said ‘Yeah, I know. See you in my dreams.’ My last words to him was ‘Hush your mouth, jail-bait.’
James was right; he didn’t come off the ventilator, and died a few days later. It sucked, but it’s life. He knew he had a terminal disease. He knew that most people with CF as severe as his didn’t survive much past 20. He accepted life and a death with grace and dignity. He may have been just a teenager, but James had a wise soul.
Nursing Lesson #1: Some people. The memory of some people stick with you forever.