Explaining Infusions to my Toddler

I have been receiving medication infusions for my Crohn’s disease since the summer of 2016.

At first, my infusions took place in the infusion room at my doctor's office, then in the infusion suite at the hospital, and then I switched to a private infusion center. In general, that was the best-case scenario - I appreciated the quiet, the private rooms, the nicer amenities, not having to walk through the hospital or the doctor's office each time, etc.

When the pandemic began, I was concerned about being immunocompromised and near other patients and individuals. So, in March 2020, my insurance helped me transition to home healthcare. My daughter was 10 months old when I began receiving Remicade in our home, and for the most part, everything has gone really well.

Home infusions as a mom

It’s nice to skip the commute, to be able to rest in my own home while I get the medication, and for my daughter to come in and out of the room and not have to be away from Mama for long periods of time.

When my daughter started talking, I began referring to my infusions the same way we explained to her the Tylenol or gas drops we’d administer to her via syringe. I thought by standardizing the language, I was helping her to understand that this medication made Mama feel better.

And for a while, that worked.

Explaining infusions to my daughter

She began to understand that every 5 weeks, Mama would spend a few hours getting her medicine, and then Mama would take a nap and be good to go for the rest of the night.

About six months ago, my daughter had two back-to-back trips to the pediatrician for small things that required exams. As her language and understanding increased, we talked all about the doctor, and how Mama sees the doctor, too.

Last month, at her 2-year-old checkup, we were talking about the colors on the walls and the masks that everyone was wearing, and she was doing great normalizing the experience of going to the doctor. But then the nurse had to do a finger poke to draw blood from my daughter, and the massive tears started flowing.

Her vulnerabilities were unearthed, and even though she calmed down quickly, I could tell that moment had changed her mind about some things.

Infusions can be scary for kids

Four days later was my regular infusion. My daughter came into the room shortly after my port was accessed and my medication was running, and she instantly got upset.

I realized that this time, my daughter associated my infusion with Mama being sick. This time, my daughter was worried about Mama.

Her insecurities and concerns were difficult for her to articulate at just 2 years old, but I could read her body language like a book. I knew that it was time to explain Remicade more, better, and differently.

So I got some help from a hippo...

My best Crohn’s friend ordered my daughter a stuffed animal hippo with a port-a-cath, and I created a magnetic way for the port to be “accessed” while I get treatments.

With the hippo alongside Mama, I explained that Mama is okay, but Mama needs these medicines regularly to help her body stay strong and healthy. We gave the hippo meds too, and then he went off to play, just like normal.

It wasn’t an overnight fix, but it did help explain in a visual way to my daughter why there was a needle in Mama’s chest, and I think it’s started to reduce some of her anxiety about infusion days.

If you have a little who’s watched you get infusions or injections, how have you discussed or explained this? I’d love to hear your experiences below!