The pulmonary exacerbation and hospital stay that changed everything

During the summer of 2001, when my late daughter, Jasmine, was 9, she required a two-week hospital stay due to an acute pulmonary exacerbation — a complication of her cystic fibrosis (CF). Life was never the same after that.

When I finally brought her home, the relief was tangled with a new kind of worry. Before, I’d always watched her closely, but after those long days and nights under fluorescent hospital lights, I started noticing every cough, wheeze, and small sign that something might be wrong beyond her usual CF symptoms.

The doctors had explained what to look for, what to listen for, but in more detail than ever before. I still remember her struggling to breathe in the hospital, the sound of monitors beeping at her bedside, the way the nurses moved quickly when her chest drew in too hard or not enough. I learned to count her breaths when she slept. Sometimes I’d awake in the middle of the night and hold my breath just to hear hers. If she coughed, I’d tense up, waiting and listening, always afraid it would turn into something more. Even though we were at the hospital, surrounded by nurses and doctors, I still worried.

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Adjusting to our new ‘normal’

We started going to the hospital more often after that. It became part of our routine, as much as school runs or dinner at the table. Sometimes it was just for checkups or labs, but other times, it was for something more urgent.

We reached a new level of preparedness. I purchased a bigger bag in case we had to make a run to the hospital and Jasmine had to be admitted. I packed one of her favorite toys, extra clothes, and the binder I’d filled with her medical notes and medication lists. I could tell you the fastest route to the emergency room from anywhere.

Medications were multiplied. It wasn’t just the usual stuff; there were new antibiotics, sometimes a few at once, each with its own schedule and dose. I kept a chart on the fridge to tick off every dose, and I double-checked every label. There were days I felt more like a nurse than a dad, but it was what she needed.

I learned how to flush her port, handle sterile dressings, and administer antibiotics through the port. The first time I did it at home, my hands shook, but I got used to it. Jasmine was braver than I was. She would sit still watching cartoons and let me do what I had to do. She almost seemed unaffected by the whole process, like it was just another part of her day.

Having a port changed things. It made administering medications easier, but it was a reminder that she was sick. I used to wish I could forget just for a day what was hanging over us. But the port was there, taped to her chest — a silent warning.

I had to give her antibiotics on a strict schedule, even in the middle of the night. I’d set alarms to get up in the dark and sit with her in the quiet, the sound of the pump filling the room. Sometimes she woke up and asked for water or just smiled at me before drifting back to sleep.

I became obsessed with the little things: if she was quieter than usual, if her color changed, if her breathing sounded off. I learned to trust my instincts, to advocate for her when I thought something wasn’t right, even if it felt like I was being overprotective. Every day, I tried to give her as much “normal” as I could, but normal was always edged with caution. Play dates ended early. We avoided crowded places. I carried hand sanitizer everywhere.

Looking back, I recognize how much those months in 2001 changed me. Before that, I took so much for granted: A cold was just a cold, and a cough was nothing to worry about. But after her two-week hospitalization, everything felt sharper and more urgent. I saw how quickly things could change and how fragile everything was.

Through it all, Jasmine was my teacher. She laughed even on the tough days, joked, and never let the medicine or the hospital trips take away her spirit. I learned to hold on to the good moments: her giggles, her stubbornness, the way she’d squeeze my hand when I was scared.

Jasmine passed away in 2019, and now all that’s left are memories — sharp, vivid, and bittersweet. I wish things had been different. But I am grateful for every day I got to be her dad, and for every lesson she taught me about love, vigilance, and hope.

Note: Cystic Fibrosis 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 other 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 Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.