This week we begin all of our work ups to get ready to be released to go back home around Day +100. They call them the Day +80 work ups, even though they span over the next few weeks. This week, in addition to our clinic visit and blood draws, we have a visit with the immunologist. I look forward to talking to him about Jacob's immune health outlook.
Overall, Jacob has been doing well. However there a few issues we are working through. One is that his blood cultures came back positive for adenovirus last week. They said it wasn't very much and we shouldn't be concerned at this point. They cultured him for it again today, so we will see what's going on with it. He hasn't really had any symptoms, so I think his body and medicines are keeping it under control, but we should hear back on the cultures in a couple of days.
Another thing is that Jacob's legs have been bothering him. His right knee hurt so badly on Saturday that he couldn't even walk. A variety of factors could cause this, but in my opinion, it's most likely from how sedentary he is. He doesn't like being active and spends the majority of the day wanting to watch tv. I know I'm guilty for allowing this, so I'm trying to get better at encouraging him to move around more. I also ditched the stroller when we go to clinic and pharmacy.
The last thing is just trying to keep his body chemistry and liver and kidneys happy while on so many medicines. The tacrolimus (immunosuppressant gvhd drug) depletes the body of magnesium. We have been increasing his mg supplement weekly because it keeps coming back low in his blood work. The tacrolimus and prednisolone cause high blood pressure, so he's still on two meds for that and is being monitored. The tacrolimus, voriconzole (anti fungal), and acyclovir (antiviral), are hard on his kidneys and liver, so his bilirubin and creatinine have been slightly elevated. And the prednisolone depletes calcium, so he is taking calcium supplements to counteract that side effect. Luckily, we are almost done tapering off prednisolone. It's due to finish July 3rd as long as his gvhd doesn't flare up. He comes off of tacrolimus 6 weeks after that. I look forward to cutting back on the amount of medications that he's on and hopefully even taking out his ng tube when he's down to 5 meds or so. Right now he takes 17 meds and supplements and receives 500ml of supplemental water through his ng, so it's still rather intensive. I'm happy things are moving in the right direction though. Thank you for your continued prayers!