Chapter 17: Hey Stephen

PICU is my favorite unit in the hospital followed closely by Pediatric ER.. But nothing about PICU is easy. What I like most about PICU is the variety. I can literally have neonates and practical adults all at the same time. It constantly challenges my brain and I really like that.

Last week, I had a really challenging case and I was talking to Chris about it

My patient was a 17 year old boy who had cystic fibrosis. Stephen has been my patient several times before; the last time, just a couple of weeks ago once before so when he saw me come into his room, he smiled.

“You’re still here”Stephen beamed.

“Yeah, where else would I go? You might come back and I not know it if I tried to work in any other unit. Others aren’t as adept at handling you as I seem to be. Or at least that what people tell me”

Stephen was surly, often 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. Maybe because of my age, he seemed to respond to me. Maybe it’s because I never treated him like a child.

“You think I am sexy.  that’s why you always want to have me as a patient.’ Stephen said to me almost every time we met.

 No sir, that’s not it at all. ‘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 cold December 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 a Duke basketball game [He 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. His breathing was constantly labored and he coughed and sputtered throughout 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 Stephen had said.  He went to talk to him and Stephen called his parents. They came and Stephen was transferred to PICU. I stopped by to see him later that night. He was still awake, not yet intubated, and had his blue, fuzzy Blue Devils blanket on his bed.  

Around 6a, the PICU attending arrived and talked to Stephen’s parents. Stephen said his good-byes–to his parents, his siblings, and to me.  

“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 doesn’t seem appropriate.

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.’

Stephen 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 into their 20s. He accepted life and a death with grace and dignity.  He may have been just a teenager, but Stephen had a wise soul.

 Some people.  The memory of some people stick with you forever.