Sometimes we run patients on a regular basis. Sometimes, those patients need regular transport to the hospital because they suffer from a chronic, life-threatening medical condition. In other words, not all “frequent flyers” are drunks who improperly replace an ambulance with a cab service.
One night, I ran one of our “frequent flyers” and had an experience that changed my life, in a small, but important, way. Our patient was quite young – just a few months old. He was born with a rare tumor that consumed the entire side of his head and neck. The tumor partially blocked his airway, so he had a tracheostomy in his neck to hold his airway open. As you might imagine, he received care from specialists at Children’s National Medical Center in DC, and his parents wanted us to transport him there, which we were more than happy to do. There is comfort and refuge in the world of experts of the rare.
The source of our young friend’s problem that evening was not entirely clear, but he was coughing, and having more trouble than usual breathing. So, we are standing in his nursery, and his parents, a lovely young couple who are very diligent and caring, are explaining the situation to us. I look around and survey the scene and I realize that the other EMTs, Paramedics and personnel look more frightened – I see the fear of the unknown in their eyes. But here, I am at home, so I step up and the paramedic lets me be in charge of talking to the family.
“What’s the name of that kind of tumor,” he asks me for the second time once we have our small friend in the ambulance. “How do you spell it?” I spell it for him again, and then I do an assessment on him, listening to his breathing through my stethoscope. And I am astonished at the symphony of sound that comes at me – stridor, rales, upper airway congestion sounds being transmitted, the tumor hitting the side of his tracheostomy tube with every little breath, sounding like a hand hitting a table. I smile at him, “hey there, cutie,” I say, “we are going to take you see your friends at Children’s.”
I look up at his mother – she is looking at me like I am an alien. She’s not used to people who are this nonplussed when they see a child like hers. Then I ask the question. I point at his heavy respiratory efforts and say, “so, is this normal for him?” Her face changes and she gives me an expression that I recognize – a little like a dear in headlights – but what does it mean? Wait, I have seen this expression before. No, better yet – I have MADE this expression before. And then the light goes on in my head.
And I am transported back almost thirteen years in time to when my son had a tracheostomy and my disbelief when medical professionals asked me that very same question. “Is this normal for him?” “What, don’t you know? You are the experts.” And so I learned how it felt to have the shoe on the other foot and I grew exponentially.
I put down my stethoscope and looked into the patient’s mother’s bewildered face and said, “we don’t see him every day. You do. He’s different than most people we encounter. We have no baseline to understand how he is now, versus how he is when he is feeling good. I need your help with that.”
She relaxed a bit and told me what was going on clinically that was atypical in her mind. When she finished, I said to her, “I’m sorry. I should have explained myself to you.” She looked at me and dismissed it, and I refused to let her do that.
“Oh no, I, of all people, should know better than that. My son had a tracheostomy when he was small and I also did not understand what people wanted or what they meant when they asked that question.”
At the hospital, we left him in the care of his nurse, who knew him on a first-name basis. As I went to say goodbye, I looked at the patient’s mother and her husband and said to them “remember, you are the experts on this child. Don’t let anyone ever tell you anything different.”
A wise man once said to me: “a wise person knows what he does not know.”
And I don’t know that.
