June 2 - Late Night Post

23:15 -- Phoo is at the hospital now, spending time with Max.... This isn't going to be a long post, but enough has happened to warrant one last entry, especially considering what will happen tomorrow.

Today, in the face of yesterday's positive report(s), Dr. D. told me that Max' hepatitis is getting worse. It had been improving then stabilizing until two weeks ago, but the test they use to measure his liver function has revealed a worsening trend. This has nothing to do with the PDA (which seems to be closing) and nothing to do with non-platelets related blood products he hasn't needed.

To make a very, very long story short we are now faced with a difficult decision: allow the doctors to [attempt to] treat the CMV causing Max' hepatitis with ganciclovir ... or not. For anyone who thinks this seems straightforward, Google ganciclovir. It's a toxic drug with potentially nasty side effects with no clinical trials to tell us it will do what we hope it will. But it's all we got.

How can this happen so soon after yesterday's improvements, which happened so soon after Saturday's freak-out? Heart murmur diminishing ... PDA may be closing ... Max will be off CPAP soon ... bilirubin decreasing ... weight increasing ... then WHAM-O! I hate this, I mean, COME ON, how much more can we take? UP DOWN UP DOWN UP DOWN UP DOWN UP DOWN UP DOWN.

So we're going to meet with the Infectious Diseases Doctor and Dr. D. tomorrow, to get all our questions answered (to the extent there even are answers), and maybe make a decision.