Again, not sure why Meal Train often lists the wrong date. It’s only 7:00 p.m. on the 18th, so it’s not like they’re based on the East Coast….no idea.
Yesterday’s update was pretty grim, and led to some difficult conversations with the kids last night. I really didn’t know what I would find when I got there this morning. So I was pleasantly surprised to find Kendall up and showering when I arrived. Yesterday he couldn’t even really sit up, and was asleep and hard to rouse most of the day. Today he was much more alert, and not nearly as confused or delusional as he’s been.
Kendall’s liver numbers didn’t go down, but they also didn’t get worse. Considering that they have been doubling or tripling every day for the past several days, this was a vast improvement. He was also able to go off his oxygen mid-day and breathe on his own. Again, progress. His kidneys are now having some additional problems and his body is still fighting a lot, but honestly we will take ANY slight signs of improvement (and some of them today were more than slight).
I took this picture of Kendall’s IV pole yesterday. This was AFTER he had been taken off of “most” of his medications because his liver can’t process them, just to give you some reference for how many medications he has been on. Still getting platelets each day, but today his platelet count did get better. Kendall’s body is having a hard time clotting, but if his platelet levels will continue to rise that should really help.
So what’s next? I was able to speak with Kendall’s doctors today, including the hepatology (liver) team, and tomorrow I hope to speak with the nephrologist (kidneys). They will try to treat the VOD with medication for the next 21 days. If Kendall’s body hasn’t responded by then then they will be out of options, but Kendall’s numbers stabilizing today was a good sign. They wouldn’t be treating him if there wasn’t hope that this could work. We did learn today that the full results of the biopsy showed that VOD is the only thing wrong with his liver (although that by itself is a very serious diagnosis). Still, it would have been worse if he had had additional infections or CMV in his liver. They will continue to monitor other symptoms and try to keep him comfortable with paracentesis procedures over these next few weeks.