Hopkins - Day Two

Today was a good day. A very good day.

This afternoon we had our very first appointment with the Hematology clinic here at Hopkins and what was meant to be a run-of-the mill pre-op appointment turned out to be so much more. Max has always had chronic issues with low platelets (the blood cells that cause us to clot when we bleed), obviously a low clotting factor is not a great combination with major surgery. Because of this we assumed that these doctors would probably recommend the obvious, transfuse Max during surgery. But we got so much more! The first doctor in the room was actually a PhD with a background in stem cell research who just so happened to also be a MD (no idiot this guy). He took a lot of time explaining to us that they recently studied and figured out how Max's connective tissue mutation fits in with his low platelet counts. They now understand the entire cell process and will be able to help the surgeons and cardiologists care for Max long term so that they can give him optimum care regarding the necessary blood thinners post valve placement. In other words, the thing that had me the most worried, long term use of blood thinners in an active ten year old boy is no longer quite as scary. I love Hopkins and all their geniuses who are so interested in taking care of and studying Max!! Sometimes it rocks being the only know medical case of something -- doctors find you exciting and trip over each other to be part of your "team".

On Friday morning they will run some very specialized blood work on Max -- in fact this is the only lab in the U.S. (and perhaps the world) that can run these tests and it seems the head of the lab is salivating waiting to "play" with Max's blood!

It never ceases to amaze me how much all these doctors know about Max before we even step foot in their exam rooms. Every time I start to give them his history they stop me to let me know that they've already read everything and have even started their own research. After years and years of hearing, "Oh that's just Max." from so many so called "physicians" who didn't know what else to tell us it seems unreal when these doctors have figured out so much in so little time. They told us they feel as if they are close to having options which will correct Max's platelet issues long term. Have I mention I LOVE HOPKINS? We are so blessed to have found this place were so many are using their God given talents to perform miracles everyday!

It truly was a good day!