Home Infusion and Injury

My first experience with home infusion was when Alex was six and got burned. Alex and his dad were riding motorcycles, and Alex decided to jump on his dad's cycle. He had shorts on, and he burned his leg on the pipe. It was just a little burn, but burns on people with hemophilia are very bad. He had to be infused every day for almost a month to take care of the burn. I did it the first couple times at the hospital, and then after that I did it at home. It's very scary the first time, but there's some freedom there. It's amazing. Hemophilia is no longer managing you when you can do the infusion yourself. When you have to go somewhere else to be infused, hemophilia manages you because it can be a half-a-day process. If you're going every day, it controls your whole life.

That was four years ago. Back then, everyone used EMLA^® [a topical anesthetic]. We live a half hour away from the hospital, and I worked an hour away. So I would drive home, get Alex, go to the hospital, put the EMLA on, and wait for an hour. Until we were set up with Outpatient Services, they would infuse him, give him fluids, and keep him for one or two hours. The whole process involved three to four hours of time. The treatment center was a lot different. They used a butterfly needle, put on a band-aid, and off we went. Alex is very interested in his own care. The treatment center always involved him in the infusion process, but the hospital never showed any interest in including him.

When I started infusing him myself, we would do it in the morning before school or right after dinner or while dinner was cooking. We infuse Alex at home the same way they do at the treatment center. We start by washing our hands and cleaning the area with alcohol. Then, we stick Alex with a butterfly needle, inject the factor, and apply pressure with a band-aid. We infuse Alex in the back of his hand, and he has started to develop scar tissue there. He has a couple veins that are better than others, so we use the opposite hand each time. We only infuse as needed; we don't do prophylaxis.

The infusion doesn’t take any time at all, and it is painless for me and involves only a slight prick for Alex. And now we have control. We can go camping or whatever. Before we began infusing at home, I was afraid to go anywhere if I had to depend on someone else to infuse Alex.

Alex's interest in self-infusion is very high. He infuses himself at camp, but I am not ready for him to do it at home yet. I'm afraid that he'd be too rushed. He always wants to hurry up and get stuff done so he can go and play. I know I need to let him be independent and trust him to infuse himself. However, I just don't feel comfortable with it quite yet.