My son is missing out on preschool due to the ongoing nursing shortage

A lack of available nurses prevents a boy with Pompe from attending school

Keara Engle avatar

by Keara Engle |

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Last February, my 5-year-old son, Cayden, started a preschool program at one of the local elementary schools. The program would prepare him for kindergarten, which he’ll start this fall. So far, preschool has been amazing for him.

A nurse has to accompany Cayden to preschool for several reasons. First, he’s in a wheelchair due to weak muscles caused by infantile-onset Pompe disease. He also has a gastrostomy tube, through which the nurse feeds him at lunchtime. And last, he needs help using the bathroom and getting his diaper changed.

Unfortunately, his usual nurse recently broke her foot and needs time to heal. I actually broke my foot last year and needed help showering and transporting Cayden for the first few weeks, so I completely understand what she’s experiencing.

The nursing agency we use has been trying to find coverage, but so far they’ve had no luck. Without a nurse available, Cayden can’t go to school. I understand this, but it still sucks.

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Cayden has been absolutely loving preschool. He’s made some friends and learned a bunch, and even though he doesn’t always like leaving me and his little brother, he’s found that he doesn’t enjoy staying home from school. I think he’s started to enjoy spending a couple of hours outside the house socializing and playing with friends.

He’s been home from school for two weeks now, and it’s getting to him. Every morning, Cayden wakes up and asks me if he’ll be going back to school today, and I have to tell him no. He gets upset and expresses that he misses his friends and wants to see them again.

I told his teacher how upset he’s been about missing school and his friends. She told me that they all miss him, too, and have been asking where he is and when he’s coming back. A few days ago, we actually got the chance to FaceTime with the class so that Cayden could see and talk to his friends for a few minutes. He really enjoyed the opportunity.

For now, it’s just a waiting game to learn when he’ll return to school. I’m hoping he can go back for a few days before the preschool program is over. I think it’d benefit both of us. I love Cayden dearly, but those breaks were helpful! I was able to get some chores done around the house and do some grocery shopping without having to take both of my kids into the store.

I’ll keep pestering the nursing agency to see if they’ve found coverage, but at this point, it doesn’t seem like it’s going to happen. We’re no strangers to nursing shortages. We even had trouble finding the nurse who typically goes to school with Cayden. However, I’m hoping the agency can make some magic happen before the end of the school year!

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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