Just a quick update:
We were discharged last night after a frustrating and physically and emotionally draining day. Ultimately we decided not to treat with iv Cidofovir because of its potential to permanently damage Jacob's kidneys, which are already being taxed by the tacrolimus. The other options were to do nothing to see if he got worse or remained non symptomatic, or to do a blinded trial oral Cidofovir called CMX001 which is supposed to be non toxic to the kidneys. We decided to do the trial for a week to see if it helps and then reassess from there. Since it's blinded, that means there's a 1 out of 3 chance that he is getting a placebo. Annoying, but we can ask for an open label if Jacob worsens or does not improve with treatment. This could potentially delay our return home depending on how many weeks it takes to clear up the virus. Jacob will also get an early ivig infusion tomorrow for some added protection even though he isn't due until next week.
Jacob is still having leg pain and falling down a lot. We've increased his calcium and he has a bone density scan next Wednesday.