End of March update

On Tuesday we went back to Cincinnati for what I'll call a "well, shoot" visit. We were all hoping that his lymphatic malformation would stop draining so much from where thy did surgery, but it hasn't. We 're at almost 4 weeks post-op and it's not even slowed down. Well, shoot! We did two rounds of injecting that usually helps shut it down but that didn't happen. The consensus is to take one more stab at it. It's (relative to other options) a lower risk option. (We've still got one vote out on this one, yet..and a rather important one!) Sounds like we'll do this the week of the 11th. They'd have us do it sooner, but we'll be gone all next week. The big change is that they want to start him on a medicine that shows some promise to stop the drainage. First, let me explain why the drainage is such a problem. Apparently lymphatic fluid carries protein, and as he loses the fluid, he's losing protein. He's been losing 4-5 ounces of fluid a day for pretty much the last month. The drainage also contains some blood, which he doesn't have any to give. His blood work wasn't stellar when we left the hospital on the 12th. So....about this medicine. The hospital has been using it occasionally for the last few years with some success, usually in cases of inoperable lymphatic malformations and other vascular issues. It's an immune suppressant, which is the biggest problem with the medicine. It's typically used as one of two or more drugs to supress the immune system in transplant patients. The medicine is a little mysterious in exactly how it works, but at this point it's all we've got. The hope is to use it for a short time (although sometimes it needs to be used for a longer time) and take him off, do another surgery and use it again if it's needed. We're pretty bummed about all of this. The medicine has always been mentioned as a possibility. I'm glad that it was, so this wasn't totally out of nowhere. That said, it still came out of left field. Other than the immune suppression, the side effects are generally tolerable. (Other than immune suppression, geez....They give antibiotics to try to curb bacterial infections, but there's still a risk of viral infections). Of course, this is a small part of the whole story. We have to decide pretty quickly about the medicine but they're giving us a few days. Of course we hope that we get the drainage stopped before we have to make any decisions, but it's not very likely.