Watching My Son Be Hospitalized With Pneumonia Is Traumatizing

As a rare disease parent, I’ve dealt with many situations. Some are happy, and some are scary. The past week has been one of the hardest by far.

It started with a common cold. Usually, my 3-year-old son, Cayden, who has infantile-onset Pompe disease, can deal with a cold at home. But this time was different — instead of getting better, he just kept getting worse.

I decided to take him to the emergency room, as he was really struggling to breathe. I also noticed other symptoms. He just wasn’t himself, he had no energy, and all he wanted to do was sleep.

When we arrived at the ER, Cayden’s oxygen level was only in the 40% range. The next thing I knew, doctors and nurses were swarming the room. I watched as they bagged my son to help him breathe, but it barely helped. I immediately broke down and cried.

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The next few minutes were a blur. Everything they tried was failing. His skin was turning pale, and his vital signs were alarming.

Then came something I never wanted to happen: intubation. Cayden has only previously been intubated during surgeries. There’s no way to explain the feeling of seeing your child hooked up to a vent with a tube down their throat.

Cayden is sedated and intubated in the hospital due to pneumonia.(Photo by Keara Engle)

Because of the need for intubation, Cayden has to remain sedated. I know this is what is best, but it doesn’t make it any easier on me. It’s heartbreaking to know that your child is so sick and there’s not much you can do to help.

When everything settled, the doctors came in to discuss what was happening. They said that Cayden has the parainfluenza virus, which caused him to develop bacterial pneumonia. His lower left lung is affected, as of now.

Doctors have him on two antibiotics to help fight off the pneumonia, and two sedatives to keep him comfortable and relaxed. He can’t be fed, so they’re also giving him fluids through an IV to keep him hydrated.

Cayden has been really sick before and required hospitalization, but he has never been this sick. The only thing that brings me comfort is the fact that I can stay here in the hospital with him.

Because of Pompe disease, Cayden’s lungs are much weaker than a typical child’s. The virus and pneumonia combination just pushed his little body over the edge.

One thing I’ve learned as a rare disease parent is to always expect the unexpected. Our children can seem completely fine one day (or minute), and then end up in the hospital the next. It’s never a place we want to be, but it’s there when we need it!

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Note: Pompe Disease News 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 Pompe Disease News, or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Pompe disease.