Beantown or bust

Well, folks, it looks like we’re going to be going to Boston after all. I got a call from the hand surgeon at Children’s Hospital Boston yesterday. It was so nice to talk to someone who seems to know what they’re talking about and yet, doesn’t act like they know everything. Basically, he told me that NO ONE has seen enough of these cases to be able to say they know what the right answer is. The reality is there are several different approaches that can be taken and he said that my opinion as the mother will determine to a large extent what approach he’ll end up taking. We seemed to be right on the same page in terms of what we’d like to see happen in the first surgery (separate the index and middle finger, drill the growth plates to stop the large fingers from getting any longer, and then debulk as much as we can). After that, he said he’d like to focus his attentions on making Liam’s thumb more functional before we even talk about the index finger. I like this plan because it means that we can make a decision about amputation AFTER we know what the nerve structure and so forth looks like inside of Liam’s hand. It just seems ridiculous to decide to amputate without knowing for certain what we are dealing with. This surgeon confirmed my feelings even more by telling me that apparently there are two types of macrodactyly. In both cases, fatty tissue builds up causing decreased function in the affected digits. BUT, sometimes nerves are affected (and therefore enlarged) and sometimes they are NOT. I didn’t know that, but now that I do, I can’t believe that anyone would recommend amputation before knowing what type we’re dealing with. If the nerves aren’t enlarged, de-bulking the fatty tissue will be much less complicated, so that’s what I’m hoping for.

At this point, I need to gather up Liam’s x-rays and other medical information to send out to him. After he’s had a chance to review Liam’s case thoroughly, we’ll decide about a meeting. I’m not even sure at this point if we’d just schedule the surgery, or if we’d have to go out there for a consult in person. I’ll keep you updated.