Coping With a Patient's Harsh Reality

Kristen Heinan -- I wonder if I can really do this. This pediatrics thing. This pediatric neurology thing. This thing where I work with really sick kids all the time. This thing where I won’t necessarily be able to make all the really sick kids better. Yes, I have known that this would be part of my reality. But no, I did not understand.

I am on pediatric surgery, and I have a patient in the PICU. I actually met him months ago while on the neurology service, during the acute phase of his spinal cord injury. But the kid I saw in the PICU was not the same kid I met months ago. That kid had been a shy but friendly kid, a kid who was in pain and was scared, but was communicative in his quiet way. That kid had been out skateboarding the day before. He didn’t know what he wanted to be when he grew up, but he actually did like school pretty much. He was one of the few teenaged boys I have met who was not obsessed with video games. His poor parents were shell-shocked as he lay there, getting sicker and sicker, losing more and more feeling in his arms and legs.

I tried to stop by and visit him, maybe a little more often than was needed, and I hoped for him. I hoped that he would get off the vent. I hoped that he would not get any of those nasty “hospital acquired infections.” I hoped that he would get feeling and movement back. I hoped that his injury just seemed worse than it really was and that he would be back to normal eventually. The neurologists shared my hopes, but were not optimistic. I was naïve. I was in denial.

The kid I saw in the PICU broke my heart. He was off the vent, but he had ended up with a trach. He was lying in bed, and the various surgical wounds were evidence that he had not escaped feeding problems and infections and unavoidable complications. When we checked his dressings, he moaned like a lost child from the wilderness. It seemed as if he had lost most of his verbal abilities -- or more likely, lost the will to use his soft-spoken language.

And why not, he has not regained much function -- although I was delighted to see that he can move one arm fairly well. His family (for various complicated reasons) does not visit, and he needs round-the-clock sitters. He suffers from some psychosis, and often calls out, “Daddy! Daddy! I’m a good boy, daddy! Why! Why? I’m sorry. I didn’t do anything wrong!”

No, sweet boy, you didn’t do anything wrong. What I would do for you, if I could, to make things go back to how they were. Why did this happen to you? What else can we do for you? If love came in IV form, I would run it “wide open” through your veins.

I am glad to see that he is being moved to another facility for more intensive rehab and therapy. I hope it helps. I hope his body will cooperate and continue to heal. I hope his mind finds peace.