When a temporary nurse steps in to help my son at school

Unexpected change puts this mother on edge, even if it turns out well

Keara Engle avatar

by Keara Engle |

Share this article:

Share article via email
main graphic for the column

I’ve become so used to my routines that when an abrupt change happens, it throws me off. Recently, a substitute nurse filled in for the one who usually attends school with my 5-year-old son, Cayden, who has infantile-onset Pompe disease.

Cayden is accustomed to having a nurse with him every day at school, but not a substitute. His regular nurse has been with him since preschool and followed him to kindergarten. We’ve gotten to know her well, and she does a great job.

Pompe disease has left Cayden with weakened muscles, so he needs assistance with certain tasks, especially while at school. Some of the nurse’s duties include feeding Cayden at lunchtime through his feeding tube, changing his diaper, getting him on the toilet, transferring him from one place to another, and pushing him in his wheelchair.

Recommended Reading
A child jumps rope while two children play with hula-hoops while toys and stars surround them.

Siblings have same gene mutations, but different symptoms: Report

Adjusting on the fly

His regular nurse had to take two days off work, which isn’t a problem for me because I know things come up in life. Luckily, the nursing agency was able to find someone to cover those days. I was a bit nervous, but I discovered that I had no reason to be.

The nurse who filled in did an amazing job. When Cayden returned home from school after the first day, he said everything had gone just fine. The nurse wrote me a detailed note about Cayden’s day, which I appreciated, because it’s something his regular nurse does, too. After that, my nerves calmed down a bit.

But then I received a phone call from the agency explaining that the temporary nurse had gotten into an accident while on her way home and couldn’t come in the next day. I was relieved to hear she was OK, but I wasn’t sure what to do.

I quickly sent an email to the school principal and the school nurse to let them know what had happened. I asked if I should still send Cayden to school the next day or keep him at home. They replied that the school nurse could help Cayden as long as I was OK with it.

I agreed, and I’m glad I did. The school nurse did a great job.

Having a temporary nurse for Cayden isn’t ideal, but sometimes there’s no way around it. I’m glad to know that when it happens, we have solutions and everything should be just fine.

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.


Leave a comment

Fill in the required fields to post. Your email address will not be published.