Have you just learned that you will need to start home subcutaneous infusions with your child? Are you new to home infusion? It can feel overwhelming and scary, but you’ll soon find the process isn’t difficult and it’s easier, cozier, and less germy than dragging your kid to the hospital or clinic for infusions!
We were recently able to switch back to home subcutaneous (subq) infusions after doing in-hospital IV infusions for 6-8 months. While I didn’t mind letting someone else do all the work for a change, having to drive 4 hours round trip and spend several hours in the infusion suite on a regular basis was getting pretty old. We’re both happy to be back on home infusions!
Starting home infusions can feel intimidating at first but, like everything else, it’ll soon become routine. Here are our top tips for learning and thriving on home subq infusions.
1. Do it the same time, every time.
I don’t know about you, but I thrive on routine. I am less likely to make mistakes or forget things when I do them the same time, every time. I set things up in the same room, in the same place. I get out the supplies, look them over, sort them the same way every time (things I need to get ready for the infusion, things I need for the actual stick, things I need for wrapping up the infusion), etc. And I do the process exactly the same way, every time. The more routine it becomes, the less likely I am to forget something important.
I don’t need to for infusions, but if it’s helpful, write out the steps in a way that makes sense to you and set it where you can see it while you prepare. Your infusion supply company, or the manufacturer of your infusion medications, probably supplies some sort of training materials that include a checklist, as well, but feel free to write your own if theirs don’t work for you. Just don’t leave anything out!!
2. Put it on your calendar.
Schedule your infusion day like you schedule everything else. We have a lot of flexibility as far as what time of day we can do my son’s infusions, but we still need to do them on the same day every week, so I have it in my calendar as any other appointment. It not only ensures I don’t forget, but also helps to make sure we don’t overschedule on that day and end up infusing at midnight or something.
3. Set up code words or mantras
I don’t mean code words, like using baby names for the process. I don’t personally believe there’s any benefit to making up innocent sounding substitutes for medical words. (Like nurses sometimes say “arm hug” instead of “blood pressure.” That’s idiotic IMO.) We call the infusion an infusion, and the needle a needle, but our code word (or phrase) is “it’ll hurt for just a minute, then it’ll feel better.” He needs me to say this every time. He will ask every time. “How long will it hurt?” and I am to respond “it’ll hurt for just a minute, then it’ll feel better.” We have a few little call-and-response tidbits like that we use for various medical things – it’s like a mantra that’s reassuring both for the information as well as for the predictability.
4. Have a preferred activity, snack, drink, or treat
Subcutaneous infusions involve a fair amount of sitting around with a needle stuck in you. I usually offer up a treat of some sort. A movie or TV show of his choosing, a device he wants to play on, an activity he likes to do, a sibling to come play with him while he sits, stories of his choosing. A special snack. If I did infusions on myself, I’d sure set myself up with a snack, drink, and preferred activity!
5. Figure out what time of day works best
Though we’ve done infusions at other times as necessary, we eventually figured out that doing infusions right before bedtime was ideal. He’s already winding down, the routine of getting into bed and being still was already established, but being allowed to watch TV or play on devices is enough of a treat to make it seem special. Maybe Saturday mornings work best for your family. Or some afternoon after school. If you homeschool, perhaps starting an infusion at the start of the school day would work best. Play around and figure out what works best for your family.
6. Find a comfy spot
Let your kiddo pick where they want to be for their infusion. We usually do infusions in the bedroom, which is comfy and where all our supplies are located, but occasionally we’ve done them in front of the Xbox, lol, and sometimes in the family room while we all watch a movie together. He’s the one who has to sit there, so he gets to pick where to go.
7. Play Therapy
Ask your supply company to send some extra tubing and dressing so your child can give a toy an infusion or two – either before you get started, or while you do his infusion, or after you finish up. Teddy likes to wrap up each infusion by giving several of his favorite stuffed animals their own infusions, and we keep a box of supplies for this purpose.
What ways have you found to thrive on home subq infusions?