The relief we feel when a fill-in infusion nurse performs well
My son's port and emotions can be a challenge, but she more than met it
Every other week like clockwork, we stay home for a day so my 6-year-old son, Cayden, can receive his enzyme replacement infusion. These infusions are the only treatment option for infantile-onset Pompe disease, the rare disease that Cayden was diagnosed with via newborn screening shortly after birth.
Cayden started receiving these infusions when he was only 4 weeks old. By now, we’re used to them and the routine of it all. Thankfully, he’s able to get them administered at home, which is so much easier than in a hospital or office. He typically has the same nurse every time. We adore her and even consider her a member of the family.
But this time, we had someone new.
Cayden’s usual infusion nurse went on a well-deserved vacation. Since we knew about it weeks in advance, we had plenty of time to set everything up for another nurse to fill in. We’ve had to do that a handful of times since he started home infusions almost five years ago. But every time we have someone new, Cayden is a bit nervous. He has some anxiety when it comes to accessing his port. We continue to tell him it’s necessary so he can receive his infusions, or as he calls them, “muscle juice.”
The port in his chest wiggles around a bit, which can make it rather challenging for someone new who attempts to access it. We were curious to see how many tries the fill-in nurse would need; some nurses have needed three! But to our surprise, the nurse we had this time was able to do it on her first try. We all sighed in relief, knowing the hard part was over.
Every nurse is different, and we’ve never had a bad experience with a home infusion nurse. Some of them do exceptionally well with children, and this nurse was one of them.
An amazing performance
Cayden enjoys coloring, putting together puzzles, playing games on his iPad, and playing with his toys during infusions. This nurse was happy to join in on these activities, and she stayed engaged with him the whole time. To make things even better, she included Cayden’s little brother, Kyree, and played with him as well.
None of these things are required of an infusion nurse, but I was happy to see her do them just as our typical nurse does. It means a lot when someone connects and engages with your child on a personal level. After all, the infusion makes for a long day, which can be hard for a young child. It takes a special kind of nurse to be able to make that experience enjoyable.
While this nurse was there and even after she left, Cayden made it known that he liked her. That made my heart so happy, because we could’ve seen an entirely different outcome. You never know what to expect of someone until that first meeting.
I’m thankful we were able to get things worked out so this gracious new nurse could fill in. Even better, she lives close to us, making her travel time to care for Cayden less of an issue. I’ll now feel confident when our typical nurse isn’t available to administer an infusion, because I know exactly who we’ll request to fill in.
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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