June 3

19:59 – What a long day. Where do I start?

As Melanie wrote yesterday, Max' weekly LFT (Liver Function Test) has a big negative spike this week. Two indicators of "bad stuff" are alarming high this week. Here are graphs of his weekly AST and ALT levels respectively:

When he was first born it was high, but then backed off and zig-zagged within a "normal" range. Now it's back in the scary range again. So we've been asked about revisiting the decision to use a drug called Ganciclovir to treat Max' CMV (cytomegalovirus) infection.

This is a heavy duty drug, with potential non-trivial side effects. However, it also has potential for great benefit. Unfortunately, there are no clinical trials on neonatal usage to provide guidance. There is only anecdotal evidence from physicians, but the cases are disparate and not appropriate to aggregate into a coherent data set. We met with both Max' primary physician and his infectious disease specialist to discuss his treatment. It was noted that he has been on Prilosec to help with gastro-intestinal bleeding/irritation, but it has been known to have hepatotoxic (liver-toxic) properties - so he was taken of that today. We're uncomfortable proceeding with the ganciclovir just yet. We've decided to wait 72 hours, to let both the Prilosec detox from his system and also to give a chance that the LFT peak may be reversing. They'll do a new LFT on Thursday, June 5 (instead of waiting until Monday), and we'll reassess at that time.

Another issue that's giving us grief is his gastro-intestinal bleeding. With such a low platelet count, Max bleeds at the slightest trauma. So far all of the bleeding has been intermittent and small, but Dr. D is nervous about the potential for Max to develop a serious hemorrhage and bleed out internally. For whatever reason, we have a gut feeling (no pun intended) that the feeding tube is the instigator of this. We're hoping that his CPAP weaning continues on pace and that we'll be able to get him on bottle feeding as soon as possible to see if the bleeding stops. We can't push it too much though because if his breathing is not stable and slow enough, he risks aspirating his milk while bottle feeding - a potentially very serious problem.