hemophilia and holidays

Infusion Redux

It’s the holiday season and as all moms of kids with hemophilia know instinctively, bleeds seem to happen more around the holidays. True? Well, maybe we don’t have hard data, but so many parents have told me through the years that many holidays were postponed, or spent in the hospital, or at home resting. Parties were cut short and travel plans cancelled. I know we had many memories of showing up after the Thanksgiving feast was already eaten, or after the presents were opened.

Maybe it’s the sugar (doctors tell me no); maybe the parents are more distracted and less focused in protecting their child; or maybe it’s the excitement, which leads to more activity, which then leads to bumps, bruises, and bang ups.

Or, maybe it’s just luck.

I was lucky yesterday. I got to infuse my 21-year-old son. When do I ever get that privilege anymore?

And I was scared to death!

Tommy was home for the holidays. We had an uneventful Christmas, and a nice day after. Yesterday we were to go visit my mom in Springfield, about two hours away. He awoke in pain, and complained of a shoulder bleed. It’s funny how some things never change, even though he is an adult, and doesn’t live with us anymore. I immediately suspected he was exaggerating the bleed [read: fibbing) so he wouldn’t have to go visit his grandmother. After all, he was out till all hours the night before. Being the kind, sympathetic mother I am, I told him to take some factor, Tylenol and rest on the car ride out.


He objected rudely and eventually I could see he wasn’t exaggerating. Shoulder bleeds are very painful. As we made our way downstairs, I offered to get the factor. He asked if I would infuse him. I suddenly realized it has been a long, l-o-n-g time since I have infused anyone. I actually got the butterflies in the stomach I used to get when I first learned to infuse him!

To make matters worse, all I had was factor 18 months out of date that someone had sent me to hopefully bring to the developing world. Tommy had not brought any factor with him; he thought we had some here already. The expired factor had been refrigerated, but, well, it was pretty expired. And, it used a needle transfer device that I am not familiar with. At all.

So this was not funny: I have a grouchy, hurting 21 year old in front of me, and I am hemming and hawing, trying to figure out how to get the stupid diluent into the bottle! I actually found myself forgetting steps: alcohol wipes! Oh, jeez, the tape! Tommy had to remind me to undo the tourniquet lest I explode his vein. What do I do again with the little bit of factor left in the tubing?

I was really, really glad when it was over. How the heck did I manage to do this when he was two?

I called my mom, who ended up coming to visit us–with five active great-grandchildren.

What a wake up call for me: you really lose your skills when you don’t use them. And I don’t live with hemophilia anymore. And there aren’t enough holidays in the year to bank on bleeds when Tommy comes to visit. If he comes to visit.

He recovered. That same night, he was back out with his buddies all night. And I was left holding the needle and syringe, wondering what to do with it: we don’t have a sharps container in the house.

I learned that: expired products are still effective; don’t forget to undo the tourniquet; and if it’s a holiday with a trip to grandma’s, count on a bleed. Just don’t count on me to know how to infuse!

Note: To see a patient from the Philippines with a shoulder bleed, go to my first YouTube movie:


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