June 5 - End of Day Blog

22:53 -- Phoo is at the hospital now, and has been since 19:00 or so; I asked him to go straight there from work b/c I spoke with Nurse S. and she said he was really fussy after I left. In fact, he's holding Max now and sent this pic to prove it. He has a new pacifier -- from Phoo's email: "He really likes the preemie pacifier (purple). The nub is smaller and he doesn't gag so much. He's also able to keep it on his mouth better without help. It also has a convenient notch for his nose."

So onto the big question, which has been answered (at least for today): NO GANCICLOVIR. Max' LFTs returned numbers that dipped down to where they were before the big spike. Dr. D. attributed this plunge either to last week's report being a fluke (due to a bad lab) or to Dr. D.'s stopping of Prilosec, which he said is a "hepatotoxic" drug. He'll get another lab Monday, and every Monday after that to see if the inflammation is worsening. Dr. D. is MOST concerned about Max' bleeding and still seemed to be leaning toward starting ganciclovir, despite every study showing that it has no effect on platelets and/or bleeding.

Dr. D. further reduced Max' PEEP on the CPAP setting to "5." I know that means nothing to most everyone who reads this, but what it means is that we're one day closer to getting that irritating $#!+ out of his nose! We're still on track for Saturday's transition, but I won't hold my breath. Max started on milk again yesterday and today Dr. D. upped the ratio from 1/3 milk and 2/3 Nutramigen to half and half. He's still expelling terra cotta colored poop mixed with some fresh blood, but there's not much we can do at this point. I asked Dr. D. if there was ANYTHING we could do to see where the internal bleeding source is, and he said that a scope is the only way. He is hesitant to submit Max to any invasive procedure because we know he's a bleeder. So, what, do we cause him to bleed further to find out where the bleeding is coming from? We'll just leave bad enough alone thank you. Max gets another CBC tomorrow to assess his platelet count, which will tell us how badly his spleen is chomping up his platelets. Dr. D. said he may need more red blood cells too, but we won't know until tomorrow.

So what's next?? Tomorrow is another big, big day. Max gets another brain ultrasound; this time we'll know for fairly certain whether he has PVL and/or permanent brain calcification(s) or whether it was CMV-induced spotting that has gone away. He'll still eventually need an MRI, but tomorrow's scan will allow the neurologist to tell us what we can expect w/r/t Max' neurological development.