Saturday, June 23, 2012

Day +77

We are back in hospital. Jacob's adenovirus count was up to 230,000 yesterday (up from 37,000 on Monday), so we don't have time to mess around with the trial medication. Jacob is getting Cidofovir 3 times a week for the virus. I wish they would have just started him on it Monday when we first came in instead of wasting so much time letting the virus grow while waiting for the trial to get all set up. They will recheck the virus twice a week to make sure the medicine is effective. Just to clarify, the adenovirus was a virus J already had in his system from before transplant. He actually had it even before his first transplant and had it reactivate during his conditioning last year. Luckily the Cidofovir worked last time and we are hoping that it works again. When the t cells are wiped out during conditioning, old viruses, such as adeno, can be reactivated. Since J's t cells are still young and immature, the virus was able to reactivate without any effective way to be kept under control.

We also found out that he has a c diff infection, which has been causing him a lot of stomach pain. He is on Flagyl for that. Even though I put it through his ng this morning, it made him throw up.

Jacob's blood counts have been steadily declining the past few weeks. Platelets are down to 30, hematocrit 25 (getting blood today), and ANC down to 800. They don't know why. Could be the infections. I'm guessing we could be here as long as a week. They need to make sure the therapies are working before letting us do outpatient. Some of his day 80 work ups that were scheduled for next week can be done inpatient, but others will have to be rescheduled, delaying our return home a bit. Glad we are here where they can keep a close eye on him.

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