Thursday, January 3, 2008

Clinic Update

Yesterday was our first "every other week" clinic visit. Although, we ended up going last week for a bit anyway. It went very well. He weighed in at 11.2 pounds again, but it was a different scale. He could have gained a bit if weighed on the same scale he usually is. EKG and chest xray looked great. He had another synagis shot; thank God that's only once a month because he screams so terribly that it truly breaks my heart. Labs were much better than last time. For the first time since he came home, they did not increase his tacrolimus dosage; he finally hit 16. His level has never been more than 6 before! I think it has in large part to do with returning to regular formula. The level of fat intake in a meal prior to the dose can change the rate of absorption. The higher calorie formula had more fat, so more of his dose was absorbed by his food rather than his body. His other white blood cell count was down again, so we stopped the one immunosuppressant that we had started for the first time last week. It's all a big balancing game. Also, his H&H (hemoglobin & hematocrit) levels were normal this week, which means his body is producing red blood cells better than before. You never know what will happen from week to week, but it's nice to have a good set of labs even for one week. This balancing act is exactly why Keegan will have monthly labs for the rest of his life. Oh boy!

In the meantime, we don't go back to the hospital until 1/16, and we might as well bring sleeping bags for that visit. He will be sedated for his echo this time, which I've been told is no fun and takes quite a bit of time. He also has his last cytogam infusion, which means we'll be dragging an IV pole and monitor around with us everywhere for at least 3 hours. Can't wait for that one.

Other than that, things are pretty normal around here. We've had a cold snap, so we're going stir crazy locked in the house. I have to say I really liked my house until I was stuck in it 24 hours a day, 7 days a week! ;) Keegan is still sleeping well and eating 5 ounces at least half of the bottles. He really loves to be in his jumper and exerciser. I know as he grows and starts to jump that we'll have a hard time getting him out of it!

Hope everyone had a good first week to the new year!