For the last two weeks, I have chosen to visit this hospital room, this patient, first.
I enter, and the calming sense of early morning quiet is quickly broken by the ongoing sounds of a breathing machine—a device that allows my 25-year-old patient with Down syndrome, “John,” to sleep through the night.
Beside him, as always, lies his mother, who has slept on a makeshift bed by her son’s side for 14 consecutive nights.
As always, I begin my morning routine in this room, and I do so with a combined sense of hope and dread—hoping that John will be well enough to go home, but dreading that I wilI have to tell him, again, that he’s “not quite ready yet.”
Standing in almost complete darkness, I look at John and squint at the oxygen settings of his breathing machine.
Two weeks ago, he was admitted to the hospital with right-sided heart failure, a condition that had developed secondary to heart complications related to Down syndrome. He is also diagnosed with obstructive sleep apnea—a condition that, in John’s case, increases pressures in the vessels that transmit blood from his heart to his lungs.
Now, he requires supplemental oxygen to breathe, 24 hours a day.
But he looks better, healthier, than when I first met him. He struggles much less in his effort to take deep breaths, or to sit up in his bed. His legs are no longer swollen with fluid backing up from his heart.
He seems calm.
I take a deep breath myself, and apologetically, I wake them.
“I’m sorry,” I say—always my first words to them in the morning. “I’d like to see how John is doing today.”
“It’s okay,” says his mother. “I think he’s doing better.”
John wakes up as well, and as he has done so for so many mornings, he smiles underneath his breathing mask and extends his hand.
“Good morning,” he says, earnestly clasping his other hand over our handshake. “Can I go home yet?”
“I hope so,” I reply cautiously, knowing that for days on end, our collective hope has merely translated into another night’s sleep in this room for John and his mother.
Still, they have remained—above all else—patient, understanding the notion that extra days in the hospital now may save them the grief of an unwanted return trip in the future.
For most of us, breathing is a subconscious process, driven by a coordinated effort between the brainstem, the lungs, and the chemical composition of our blood. It is a process we undoubtedly take for granted.
Our goal for John, of course, is for him to breathe without struggling to do so. If we reach that goal, we can help John reach his own goals—one of which he mentions to me every morning.
“I’d really like to go home so I can see my dog,” he says, his voice often cracking and his eyes welling up as he describes his dog to me, each day as if for the first time.
“I know,” I reply. “Let’s see if we can make that happen.”
After morning rounds—during which I discuss John’s progress with the rest of his medical team —I return to John’s room. He is sitting up in bed, his exhausted mother still by his side.
I realize that, for two weeks, I have spent more time with John and his mother than with my own family and closest friends.
And for the first time, my sense of dread upon walking into the room gives way to anticipation.
I tell them the good news—that, although John will require oxygen at home, he is stable enough to leave. Tonight, they can at last sleep in their own beds.
John, perhaps appropriately, says nothing in return. He simply smiles and sighs—out of relief, I’m sure, and with the thought of seeing his dog again.
It is, without question, the deepest breath I have seen him take in two weeks.
The next morning, purely out of habit, I visit John’s hospital room first, almost walking in and expecting to see him lying in the dark, with his mother next to him.
Now, the room is unoccupied. The window shades are up, and there is no sound of a breathing machine.
I simply stand in the doorway—still unsure why I have chosen to visit this room first every day, but aware that perhaps part of the reason is for this moment, when I know that John is breathing okay.
And I don’t have to wake him up to ask.