My son’s pneumonia reminds me I still don’t know what I don’t know

I expected today, as this column is published, to be long and exhausting. I’d been scheduled to drive to my central Nebraska home from Denver, then help the marching band perform at halftime of the high school football game.

I’m a mom to seven children: Lexi, 24; Max, 19; Chance, 18; Rowen, 16; Charlie, 14; Mary, 10; and Callie, 3. All of them are active in their schools or communities, and Max, Rowen, and Charlie all live with Duchenne muscular dystrophy (DMD).

Between driving to Denver for medical appointments for my sons with DMD and volunteering for all of my children’s activities, my schedule is always filled. However, I’d been in Denver just the week before and was dreading another drive there.

Originally, Rowen was scheduled for an overnight sleep study at the Children’s Hospital Colorado last week. Driving six hours to watch Rowen sleep in a hospital room and then driving another six hours home when the participants were released at 6:30 a.m. didn’t sound like the most fun thing. I would’ve preferred that, however, given that he’s currently home recovering from pneumonia.

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Did I do enough?

Rowen’s pneumonia took a long time to diagnose, and I’m struggling with that. Rowen had a lingering cough for a month. He had no fever and, aside from the cough, seemed well. About a month after the cough started, I took him to our primary care doctor for a suspected urinary tract infection and mentioned the cough. His lungs seemed clear on exam.

Our local doctor wondered if Rowen’s ACE inhibitor could have been the cause of the cough. That made sense, especially since his older brother Max had the same problem.

Rowen and his brothers with DMD were scheduled to attend a clinical trial appointment at the Children’s Hospital Colorado 10 days later. I waited to discuss the cough in person. At the appointment, the trial doctor listened to Rowen, thought his lungs seemed clear, and spoke with Rowen’s cardiologist and pulmonologist.

Rowen’s cardiologist switched him to another medication to be safe. Meanwhile, the pulmonary specialist wanted a chest X-ray, which turned out to be important because the X-ray showed pneumonia.

Learning about the pneumonia last week wrecked me. I felt guilty after realizing that Rowen was that sick, and that I hadn’t realized it was pneumonia sooner or pushed for a chest X-ray. It could’ve gotten much worse if the doctors hadn’t spotted it when they did.

I felt so bad that later that Wednesday night, I bought him a Nintendo Switch. The next day, Sept. 4, as we drove home to Nebraska, my stomach hurt. I felt utterly overwhelmed knowing Rowen had pneumonia; I’d never suspected that.

Rowen is doing OK. We’re using the cough assist and monitoring him closely. It’s hard, though, because I usually feel I’m a strong advocate for my children and work hard to keep them healthy. But this time, I felt I’d let things slip.

Even though I made a doctor’s appointment and inquired about his cough, his pneumonia went undetected for an additional 10 days. I should’ve asked for a chest X-ray early. But as a Duchenne mom, sometimes I don’t know what I don’t know.

I guarantee I’ll ask about pneumonia every time Max, Rowen, or Charlie has a cough from now on. The learning curve for parents of kids with Duchenne is straight up. I’ve learned a lot in the 15 years since my sons were diagnosed. However, each new experience, like pneumonia, makes me feel like I’m starting over.

I need to remind myself that I’ve figured out new things before. For example, I learned how to help Rowen in the bathroom when he broke his leg at the age of 11. Later, when Charlie started to need his wheelchair, I learned how to navigate life with three sons using wheelchairs. I know now that I’ll learn how to help my son recover from pneumonia.

Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.