A Wave of Emotions Hits as My Son Is Discharged From the Hospital

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by Keara Engle |

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Last week, my 3-year-old son, Cayden, was discharged after a two-month hospitalization due to pneumonia caused by a human parainfluenza virus. Several unfortunate events occurred during this time, and as a result, I’ve been left with a variety of emotions, both good and bad. Coping with these emotions is challenging.

Happiness is by far the best emotion I’ve experienced during this time. I’m so grateful Cayden was able to come home just as strong as he was before he got sick.

He was intubated for about four weeks, and getting him successfully extubated was a challenge. However, after the third and final attempt, Cayden was able to breathe again on his own. I’m so happy for that.

But I’ve also been feeling nervous and paranoid. Although Cayden is doing well now, I’m terrified that he will get sick again and end up worse than he was this time. It certainly wasn’t easy seeing my little boy with tubes down his throat enabling him to breathe, and with too many wires connected to his body to count. It’s a sight no parent should ever have to see.

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Relief is another emotion I’ve felt. For so long, I felt as if the weight of the world were on my shoulders. Cayden got very sick, very fast. I had many heart-wrenching conversations with several doctors. When Cayden finally started getting better and we got closer and closer to coming home, I felt so relieved.

I’m also frustrated. Although my son has been hospitalized more times than I can remember, it’s never been as bad as it was this time. It’s so unfair that Cayden, as well as everyone else with Pompe disease, has to face so many challenges in life. I wish Pompe disease had a cure, but it doesn’t. Although science and technology are evolving, unfortunately, it doesn’t seem fast enough for many people with rare diseases.

It’s not uncommon for parents of children with rare diseases to internalize all of these emotions. While we’re in the hospital, I try to stay strong and hold it together. But when we finally make it home, my emotions hit me like a ton of bricks. Thankfully, my home is my safe space where it’s OK to break down and work through my emotions. Plus, I have the support of family and friends whom I can lean on when needed.

This wasn’t Cayden’s first hospitalization, and I’m sure it won’t be his last. But for now, I’ll hold and love on my little boy for as long as I can!

coping with emotions | Pompe Disease News | Cayden and his little brother sit on a chair together the day Cayden was released from the hospital.

Cayden, right, is discharged from the hospital last week after two months of treatment, due to pneumonia. His little brother, Avery, accompanies him. (Photo by Keara Engle)

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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.

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