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When My Son Started to Wheeze

This winter, my toddler was repeatedly struck by a mystery respiratory illness. It sent him to the PICU — and forced my wife and I to seek answers no one had.

It was too bright and cloudless outside and my son kept hooting while my wife and I were trying to get our questions out to the doctor. I felt unmoored and just wanted — no, needed — to know one thing: What does a wheeze sound like?

My son looked healthy that afternoon. He charged around the pulmonologist’s office, clawing the paper on the examination table before examining the strips of paper like a 17th-century fur trapper. He smiled constantly. But he was sick. And we didn’t know what to do.

He had been hospitalized twice in the past month. Our curious, loud, 30-pound 18-month-old had twice now gone from a runny nose to wild respiratory distress. Perilously low oxygen. Breathing so labored that his little body started to whip forward with each exhale. The second time he was so sick that he spent two days in the PICU.

In both episodes, he declined swiftly: sniffle to hospital admission in less than six hours. In both episodes, the lab results were bland: rhinovirus. The common cold. How could a thing so pitiful and common as the cold have brought our son to intensive care and us to our knees?

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In both episodes, after he spent a few days in the hospital, my son would be fine again. He would literally bounce in his hospital bed. Doctors and nurses would nod sagely and say, “He looks great!”

And for ten days or so he would be. Then a sniff became sheets of mucus and down the rabbit hole he went.

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I had no answers for this terror. I was learning that much of our life was going to change, for a while. My just-settling-into-routine world was shifting.  All of the big questions I could conjure froze me: How bad can this get? What is going to happen to my son? How bad are the answers to these questions?

I needed something, anything to grasp onto. So I wanted one thing. In the doctor’s office, after asking other questions, I wanted to know what a wheeze was. Exactly.

What did it sound like?

The doctor said, “What?”

“A wheeze. What does it sound like exactly,” I said.

“Because we’ve been told that it’s a key thing to listen for, and we’re still not sure what it is,” my wife added.

“Well, um, it’s a sound that’s made when someone cannot move air in their lungs easily, and the alveolar sacs have to forcibly…”

My wife stopped him, “Okay. But what does it sound like?”

“A kind of whistling sound, yeah,” the doctor said.

I asked, “Can you imitate it?”

He paused. Looked at us as if we had just asked him to travel through time.

This doctor had spent the past hour going over a checklist on his computer without making eye contact with us. He responded to our timeline of our son’s illness with dreary, rehearsed patterns of “mmm” and “uh huh.” He had no questions or comments of his own to pepper in. To us, he was a metronome who had been trained to work with humans.

I needed more. A whistle how? Like a train whistle? The goddamn tin whistle from the Titanic? Like a songbird? There are a thousand whistles. Come on. Which one?

Of all the things this winter, I felt that if I could define a wheeze I could be a father again. If I could name a thing as stupid and minor as wheezing, I could wrench back some control.

I’d heard new terrifying sounds come from our son’s body this winter — blazing coughs, the muffling groan of snot that covered his airway like a caul. I wanted to catch a wheeze in the act, not only because I thought we could beat the tide of illness that would soon sweep across our son, but also because I wanted to name something, to pin it down.  

***

I had hesitated the first night in January. We knew something was wrong. My son could fall asleep, but not stay there. He had a little cough. I had said, “No, no, let’s try to put him down again. He’s so tired. Let me try to rock him.” He’d try to doze, sleep for an hour, then be up again, working for every breath, huffing like an animal trying to haul itself up a snow-covered hill.

A little after 4 a.m., my wife lifted up my son’s shirt, looked at his chest, and asked me, “does that look bad to you, too?” His skin was pulled across ribcage and he was starting to pump his head and neck (Soon I’d learn descriptors like “intercostal retraction” and “bowing” but at this point I didn’t have the terrifying medical terms). We called a nurse line. The nurse asked to listen to his breathing over the phone. She did. “You need to go the hospital right now,” she said.

I took my son to his follow-ups. Doctors and nurses smiled at how boisterous and sweet and hearty my son looked and shook their heads. No one had answers. “Crazy winter, right?” someone said.

We drove across the North Texas sprawl to a hospital that looked as if it had been built yesterday, alone with its fields of parking in the prairie midnight.  We got in the door and gave up control. It was all fine: IV, oxygen tubes, chest X-rays, grumpy nurses, a kind ER doctor, bronchodilators, clarithromycin, maneuvering our son from lap to bed and back.

Three days after admission, my son was home. The hospital thought it might be bacterial pneumonia, maybe just a one-off reaction to a generationally bad flu season (It was, after all, a terrible flu season; in Texas alone, over a dozen children died from flu and colds). I took my son to his follow-ups. Doctors and nurses smiled at how boisterous and sweet and hearty my son looked and shook their heads. No one had answers. “Crazy winter, right?” someone said.

Two weeks later and our son got sick again. That we knew what was happening made it worse. A runny nose in the afternoon, huffing for breath by 10 p.m. My wife drove to the hospital this time. I sat in the backseat, my son’s hand holding my index finger, him snorting and huffing, making the kind of eye contact that animals make when they try to hide an injury. Even with only the lights on the highway, I could see that his fingers and cheeks were reddening.

At the hospital, the situation worsened. The treatments that worked last time now didn’t. The number of doctors and nurses and technicians doubled in the hospital room. When that happens, you know it is not going well; when they all slip on additional layers of gowns and eyewear, it’s worse.

At the hospital, the situation worsened. The treatments that worked last time now didn’t. The number of doctors and nurses and technicians doubled in the hospital room. When that happens, you know it is not going well.

The attending was sweating as he began talking about how protocols of high flow oxygen were not giving us the results we had hoped, and because of that…

“It sounds like we’re going to PICU,” I said, cutting him off.

The doctor nodded and exhaled, “You are going to PICU.”

Naked except for a diaper, socks, and socks on his hands so that he wouldn’t rip out his IV, our son huffed through the night. Prednisone. More oxygen at different ratios. Vacuuming of his nose and throat so rigorous that bits of blood from his sinuses blended in with ropes of snot coaxed out from his body. We heard a pop when the repertory technician pulled a large hunk of snot out of his throat. We could hear the air fill the space.

My wife and I delivered detailed family medical histories to the doctors in the hall, discussed habits of our two dogs and whether they lick our son’s face, tried to recall the minuscule sounds he might make while he eats. I was proud to be able to rattle off every stat and narrate the minor turns in his first year of life. My parents worked in hospitals at various points. I tell myself that I have little fear of death. I think I still do.

You’re not sure where to put your fear, your suffering, how to weigh them as though they were canopic jars in the Ancient Egyptian underworld.

Two days later, and my son had stabilized. He didn’t need supplementary oxygen. He was smiling and devouring juice boxes and marched — literally marched — on his hospital bed. He was trying out basic back-and-forth chirps with nurses and us.  The lab came back with the same answer as it had before: rhinovirus.

That wasn’t good enough. At home, my wife and I were on a mission. We removed our son from the outside world. We pulled him away from situations with other kids — classes, friends. Stripped his bedroom down to the sheet on his crib, wooden furniture, and an air filter. I pulled back from freelancing to take point at home. My wife, in her first year of a supremely demanding finance job, made the perpetual, adamantine effort to be in two places at once. Our son’s nanny learned how to use nasal vacuums, nebulizers, and other gear.

I found better doctors. I became the Sam Malone of nebulizers. I spent the most intensely sobering morning of my life in the waiting room of a children’s hospital that specializes in machines, prostheses, and equipment. Everyone has it tough, that’s true, but you see a family moving through the world with a profoundly sick child — a child objectively more sick than yours (we knew that our son didn’t have an illness like cystic fibrosis) — and you’re not sure where to put your fear, your suffering, how to weigh them as though they were canopic jars in the Ancient Egyptian underworld.

And then, a month ago, our son had a third breathing episode. This time we kept him out of the hospital. My wife and I were in Platonic two-halves mode. We had the medicines and the equipment on lock. I rigged tubes for the nebulizer so one of us could sit by the crib instead of having to hold a mask a millimeter from his face while he slept. We felt like old pros. Our diligence paid off. He was sick, and we helped him, and he got better.

***

It’s been one month since his last episode. No one has been able to describe what a wheeze sounds like, exactly. I imagine that there’s a range. It sounds different for each of us, I bet.

The control that I had desired so much during the early days of my son’s illness has faded a little. I’m less attracted to the idea of fatherhood as the shimmering goal just ahead of you, a bell tone of noble achievement that rings for the rest of your life. This winter showed me that the loss of control is necessary to parent. You don’t know anything and you have to keep going.

My son has bad, treatable childhood asthma. Probably something else, something subtle and chronic with his immune system. It was a generationally bad year in the U.S. for all things upper respiratory. My son is a pathogen magnet who loves sweetly getting up in other kids’ faces. These are all just passing facts. They are true. But there are another 100 points of darkness around him, little unknowns, and broader blank spots. It’s hard not to borrow worry.

But it’s warmer now. He takes the inhaler like a champ. He’s mastered the words bye-bye and boo. He’s getting out more. He’s running across the lawn and barking his version of “bird!” at the birds. I know that sound. That’s all I can hear.