Gabriella's 2 amazing post-transplant doctors worked Monday night on the best plan for Gabriella's treatment. Since it was a very new infection of CMV they found, and did not cause symptoms or distress to her heart, we were very fortunate to have a simple hospital stay. The biggest concern after doing her first few infusions of the medicine (Cytogam) she was given to stop the growth of the active CMV was how to keep the virus from reactivating. They decided the safest way was to send her home with an additional 10 days of IV infusion of the Ganciclovir, which prevents new CMV from growing. If they plan on doing the additional 3 infusions of Cytogam they will let me know tomorrow, but that depends on how much active CMV is still in her system.
The big decision was made yesterday about a PICC line. A PICC line is a deep vein IV which is more permanent than a peripheral IV which goes into a shallow vein in your hand or arm. I was completely against getting a PICC line when the original plan was to return for IV infusions on day 14 and 21.... because it seemed awfully excessive to place for 2 infusions a week apart given the risk for infection with it is high. But when it turned into the new plan of action, meaning 2 infusions a day, I didn't hesitate. The best news is they can draw blood from it as well! Gabriella was getting blood drawn 1-2 times a week and she can go a couple weeks now without being poked. She did well getting it placed. Of course, anytime she goes under sedation I am an emotional wreck, but I knew she was in good hands. I only cried halfway down the hallway.... not too bad. ;)
The home health nurse just left, giving me a 'tutorial' on the IV pump and meds. I do have to give myself credit and say that in spite of her not really giving me a hands on teaching AND not even listening to anything I said, I already knew what to do and merely went through the actions for the sake of the appointment. It is terribly difficult having someone talk to me like I have NO idea, when they themselves are completely unfamiliar with anything transplant related as they pretend to know. I'd much rather have someone ask me and truly listen to my answer to they themselves can educate themselves on things they might face again in the future. That is one thing I respect about our nurses and doctors at Loma Linda... they know I like to be informed and I know my stuff.
Gabriella is now high risk for CMV. When her 10 days of this Ganciclovir is completed, she will go back on Valcyte, which is the oral form of the IV med and that she was on for the first 3 months post-transplant. We will most likely do another 3 months of that and take her off again. After that? See what happens. It will be trial and error. The worst part if even if she does well when she goes off Valcyte in 3 more months and does not get CMV again, she could get it at any time. The doctors have seen patients have an activation of it years after transplant.