The search continues for a nurse to accompany my son to preschool

A nursing shortage is preventing my child from being with other students

Keara Engle avatar

by Keara Engle |

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In today’s world, nurses are in high demand, and thus they’re also hard to come by. Because of this, my 4-year-old son, Cayden, who has infantile-onset Pompe disease, is unable to attend preschool at the moment.

Awhile ago, I wrote a column about the pros and cons of sending my son back to preschool. I’d planned to send him at the start of the 2022–23 school year, but all of the preschool classes in our area were full until now.

I was ecstatic to hear that a spot had opened for him in a preschool class just a few minutes from our home. Cayden has been patiently waiting, and now, his name is at the top of the list. However, the school staff can’t meet all of his needs on their own, so they’ve requested that a nurse attend with him. 

While I personally would prefer a nurse to go with him for his own safety, the reality of the shortage is difficult for us. Cayden wants to go to school so badly. He knows that his uncle LJ, whom he looks up to, attends kindergarten, and Cayden wants to go to school just like him. 

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Anxiously waiting

I’ve reached out to our insurance company to get the ball rolling with this whole nursing situation. However, it’s been a few weeks now, and none of the agencies in our area have been able to find us a nurse who can attend school from Monday to Friday. It’s truly a bummer, because the nursing situation is the only thing that’s holding him back from starting preschool. 

Cayden requires a nurse to attend with him because he has more needs than most children his age. His muscles are weakened, which is a common Pompe disease symptom. The weakened muscles have left Cayden immobile, which requires him to depend on other people to move around. He uses a wheelchair and needs to be lifted from one spot to another.

Cayden also requires help with eating. While he has shown an interest in oral eating for pleasure in the past few months, he still uses his feeding tube for all of his nutritional needs. Cayden has had a gastrostomy tube (G-tube) since he was 6 months old. He will need to use his G-tube to be fed lunch while at school. 

Toileting is another thing Cayden needs help with. We’ve been working on potty training, but we’re unsure exactly how much bladder and bowel control he has. He uses the toilet when he’s placed on it, but he won’t communicate the need to go. Because of this, he still wears diapers. A nurse would need to change Cayden and place him on the toilet afterward. 

Hopefully, a nurse will become available soon. My child deserves the right to an education like everyone else, although I understand that we want to keep him as safe as possible. I wouldn’t send him anywhere if his needs weren’t being met. 

I’ll cross my fingers that he’ll be able to have at least a few months of preschool before starting kindergarten in the fall. However, I’m also soaking up the last few moments with my son at home all week. As happy as I am for his opportunity to attend preschool, it’s bittersweet to watch him grow into a young child and exit his toddler phase.

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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