My Son’s ERT Infusion Nurse Is Like a Member of the Family

Keara Engle avatar

by Keara Engle |

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Getting a six-and-a-half-hour enzyme replacement infusion once a week can be stressful. And I’m not even the one getting it.

My son, Cayden, 3, gets an infusion called Lumizyme (alglucosidase alfa) to treat his infantile-onset Pompe disease. While the infusions have become routine for us, they haven’t always been easy. Thankfully, Cayden’s infusion nurse, Angel, has made things a lot more manageable. 

Angel has been working with our family since we began doing home infusions when Cayden was a year old, and she’s become like family to us. While her main duty is being his infusion nurse, she’s gone above and beyond that, especially recently as I dealt with some health issues of my own.

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Some weeks back, I got sick with a head cold, but several days ago I woke up in excruciating pain and began vomiting. The pain was like nothing I’d ever experienced — even worse than labor! I rushed to the emergency room only to find out that I was dealing with a kidney stone

I’ve had kidney stones in the past, but the last one passed fairly quickly. This time, things were much different, and the stone has still not completely passed, but it’s making its way out. The doctors prescribed pain medication and told me to stay hydrated. Still, I could barely get out of bed, let alone take care of Cayden.

While my family and friends were a huge help during this difficult time, I knew Cayden would still have to get his enzyme replacement infusion despite the pain and exhaustion I was experiencing. Life doesn’t stop for unexpected events, after all.

When Angel arrived last week for Cayden’s home infusion, she stepped in and did way more than she’s required to do, and both she and my younger sister tended to Cayden for the better part of the infusion, letting me stay in bed and rest.

It’s difficult for me to trust others to watch my son, because there’s a lot to take care of. Between Cayden’s gastrostomy feeds, his medications and breathing treatments, and diaper changes, it’s easy to feel overwhelmed. And on this day they both could see I was dealing with a lot.

Angel told me to take the day off and to let her and my sister handle things with Cayden. I can’t express how thankful I was for that, for letting this caregiver get some needed rest.

Finding a great nurse can be challenging, but we got lucky on the first try with Angel. She has always been there for Cayden. She showed me last week that she was there for me, too.

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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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