Home infusions take us to as close to normal as I ever thought we’d get

When my daughter Caroline was diagnosed with late-onset Pompe disease as a baby, we started enzyme replacement therapy before her first birthday.

I remember spending what felt like endless hours at our children’s hospital, meeting new doctors and nurses, going through test after test. At first, it was overwhelming and scary. But as the weeks went by, and I saw the same faces over and over, the fear faded. The hospital wasn’t just where Caroline received her treatment — it was where I learned to trust the process.

When you’re raising a child with complex medical needs, trust builds slowly. It takes time and consistency. Once we settled into the rhythm of weekly infusions, the hospital stopped feeling scary and started to feel safe — almost like coming home. That sense of comfort didn’t come from the machines or monitors, but from the people. The nurses knew Caroline so well and understood both of us in a way that made it easy to trust them completely. I stopped dreading our visits.

So, when the idea of home infusions came up, I didn’t jump at it.

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A big change

Switching to home infusions made sense in so many practical ways — we were about to move much farther from the hospital, which meant my quick 20-minute drive would turn into a long hour and 20 minutes each way — but I was also pregnant with our third child, and the thought of changing our routine or adding something new felt overwhelming. I just didn’t have the energy for another big change. It also meant stepping away from a place where I felt completely safe. Letting go of that, even for something that might be better, felt a lot harder than I expected.

Home infusions made sense logically, too. Caroline had never had a bad reaction to her medication. We’d spend less time at the hospital and have more freedom. She was 4, and it was getting harder to keep her entertained and happy during those long days. But she also loved her nurses and doctors, and I worried about taking that away from her. I wanted to make sure I was doing what was best for both of us.

We did move eventually, and the long drive really was as hard as I expected. Friends and family encouraged me to try home infusions, and I finally agreed to start looking for a home health nurse. I was told it might take a while to find the right pharmacy and nurse, but it only took two days.

I barely remember Caroline’s first home infusion. The first few are all a blur. She was scared and unsure, and honestly, so was I. Those first months were rough. Caroline fought every step of the way, and it was hard to get her to cooperate. She started to lose trust in the process, and I knew I had to do something different — fast.

A second attempt

So, I brought her back to the hospital for the next few infusions. Each time, she relaxed a little more and remembered how things used to be. She started to trust the process again and felt comfortable in that familiar space.

But I knew we couldn’t keep going back and forth forever. We had committed to home infusions, so I kept searching for a pediatric nurse who really understood how to access a port. Finally, we found the right person.

Our second attempt at home infusion happened on my very first day home with our new baby. I can still picture opening the door, holding my 4-day-old son, with Caroline wrapped around my leg. The moment our new nurse walked in, I just knew she was the right fit. She greeted us and focused right away on Caroline, coming prepared with ways to help her feel safe and calm. The sense of comfort made us feel like we were back with our hospital family.

Our home health nurse took the time to learn about Caroline’s disease and cared about her as a person, not just a patient. She became part of our lives and felt like family from the very beginning.

Now, Caroline can get her infusions at school. She gets set up before the school day starts, then tucks her tubes and medicine into a little backpack and carries on with her day. Her nurse checks her vitals during class transitions, and when the infusion is done, she’s de-accessed right in the nurse’s office.

Caroline gets to spend her day in her own space and just be herself. That feeling of normal is something we don’t take for granted. Home infusions have brought us closer to that than I ever thought possible.

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.