Today's Thursday and our days consist of whatever surprises the doctors throw at us. It feels like Andrew is the dam and little leaks keep springing. Each time we get one fixed, another one squirts us in the face.
His bacterial infection cleared up when the port was taken out, but then he got another virus called CMV, which affects the lungs and bladder - the two areas of his worst problems. The BK virus continued to be a pretty bad problem, so they began infusing him weekly with Cifofovir, which can be very toxic. The good news is that today the BK levels came back at 2,600, which is good considering they were above the 10 billion mark. They will do one more round of Cidofovir tomorrow then stop.
Andrew has begun retaining fluid again, which affects all the other organs in his body, so they are working on finding the right formula of hydration - enough to flush the BK Virus but not too much where he retains it.
The cards, letters and gifts Andrew has received has been such a boost to him. To get mail on a daily basis, a couple of the days several pieces, is very uplifting. It's fun for him to open little gifts. There's not much to his day except sitting in a hospital bed and sleeping right now. He has lost a lot of muscle tone, and just standing sends his heart rate up to 160. The high blood sugar and steroids eat away at his muscles. The blood sugar levels are beginning to drop thanks to getting the right amount of insulin in his body. He even got below 100 today!
It's always good to hear from you all. This is a huge roller coaster ride, and being here alone is hard at times. The nurses are wonderful and I can ask for hugs, but I miss you. Please feel free to drop me an e-mail anytime. You can try to call, but cell service isn't great here, and Andrew doesn't like me to leave the room much because every time I do a doctor or therapist shows up.
We will be here at least another couple of weeks. Andrew will continue his 3-times per week ECP treatment for a month, then they will reassess. He's not out of the woods, but he's holding his own, and I'm very proud of him.
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