Day 37: Update

We are hanging in there. Ian's weight gain has stabilized a bit, only gaining one pound overnight rather than 4 plus as before. He is feeling a bit more chipper and able to be present. We even walked laps for half an hour this afternoon. It will take at least a week or two to know if he is responding to the treatment, so we are just waiting it out with hope.

Thankfully, Ian has been able to hold down odwalla protein drinks so he is getting some nutrition. They are being as conservative as possible with IV fluids since his bloating continues to increase. It's a delicate balance because he needs to stay hydrated, but also they need to watch his fluid intake and outflow to make sure he doesn't gain too much fluid.

They are delaying draining his belly until it prohibits breathing or kidney function to a significant degree. Ian protested about getting stretch marks, but his doctor said he doesn't care about those. Glad Ian has the pep to throw in little comments like that occasionally :) On the serious side, Defibrotide has a possible side effect of fatal bleeding and he is having to have daily platelet infusions already, so they are avoiding needles as long as possible. We also just found out this is the first time they have ever administered Defibrotide here at UCSF and it has only been tested on less than 200 patients. So keep those prayers rolling...

Thank you!