Monday, August 12, 2013
Tough Clinic Visits
I apologize for the lack of a post following last week's clinic visit, but it's been two weeks in a row with not-so-great news. Last week was a stressful visit at transplant clinic and this week was much of the same. And not just because of the lack of sleep, spending way too much time in the car, or waiting hours at the hospital to see the doctor with an antsy 2.5 year old! Stephen's blood work hasn't been great the past two weeks and I just wish his blood work would match what we see on the outside. It's very hard to explain exactly how things are going to people when your child is running around like a mad man, chatting and singing up a storm, and all around doing so awesome by the looks of it; but, what's happening inside his body isn't reflective on the outside. He's still having trouble with his white blood cell count (this week was an all-time low) and now fighting a virus called the BK virus. It's not a virus that manifests itself as a cold or sore throat or anything like that (in someone who is immunosuppressed), but rather a virus that has the potential of hurting his new kidney. So we have started a new medication to help fight off the BK virus, will stop his cellcept today, and start the neupogen shots again. And with all of this happening, I will have to continue to take him to Philadelphia every week (we were supposed to start every other week visit today) with labs at home in between and have been asked to keep him away from lots of people until his white blood cell count comes up. Here's hoping the shots and the new medication combo works and things start looking up super quick!! We could just use some good news for Mr. Stephen!!