"My arm hurts."
B_Dub and I take a look, and yep, it looks like a bleed. The bicep's swollen. It's not huge; it's not hot. It is swollen, though, and since our h/o nurse told us to be wary of any changes, I call the hospital. Because of the holiday, our hematologist isn't on call. The doctor who does speak to us tells us to go ahead with today's scheduled infusion and call the clinic in the morning. Gee, thanks. Why didn't I think to treat a bleed with factor? Ugh. We'd been told to notify them if we had any problems, but when I do, I feel stupid.
So R gets his factor and spends the rest of the day swimming, eating, playing with cousins, performing for grandparents. His arm isn't bugging him, and except for the time when K_Dub, his 8-year-old sister, socks him in the pool, the bleed is forgotten for the day. But tomorrow looms, and I'll have to call and follow up on this scary development.
The blasted inhibitor that turned our lives upside down in October of 2004 returned this March. This time around we aggressively attacked it with high doses of factor 8, and the level (which was never too terribly high) returned to zero within a few weeks. Part of our aggressive attack was to do infusions daily instead of every other day, but we were told that would be for just one month. After 10 weeks of the daily routine, we FINALLY got the go-ahead to drop back down to every other day. Just in time for summer, we thought.
We've been on our every-other-day routine for a week and a half, and R gets a bleed.
So what? Why does this matter? Why get bummed about an added 20 minutes of procedure on alternating days? We are so very grateful to have factor in the first place. Our kid is in great health, active as he wants to be. Still, the thought of returning to daily factor haunts me. The best I can figure, it boils down to this:
- Having a day off from factor helps to ward off the drudgery of the routine.
- To get the super-high dose of factor, R has to get four boxes' worth of factor. Each box is 2"x2"x1". When we have a month's supply of factor in our house, about a third of our fridge is consumed by those boxes.
- When R goes to camp later in June, I may have to be there every morning to oversee his infusions (as opposed to two mornings in the middle of the week). It wouldn't be such a big deal if K had a place to be that week. I can't bear the thought of leaving her here with B (who'll be working from home) while big brother's having fun with all of his church friends.
- When we take our big vacation in July, we're looking at transporting gobs of factor, which has to stay refrigerated. I've already been trying to wrap my head around those logistics, and now we may have to double the amount of factor we'll have with us.
So maybe everything's fine. Maybe the swollen arm is nothing. Or maybe we just need to give up the hope that we can go one day in a row without factor.