Baltimore - Day Two

Today was the day that never ended. We started our day with an echocardiogram at 8:30 and from there we proceeded through to see Max’s GI and Cardiac Geneticist. Beyond the doctors’ visits Max also endured a slew of blood work (he decided to count the tubes as they were being filled, when he reached 13 he told the young lady to stop because he wasn’t going to have anything left in his veins if she didn’t quit) and other tests. He was a real trooper but it was obvious he was exhausted by the whole thing. This became very evident during the last appointment of the day when he walked into the exam room, laid down on the table and proceeded to fall fast asleep complete with snoring and drooling. I’ve never seen a doctor do an exam on a “dead to the world” eight year old but it was rather entertaining!

 Overall everyone was happy with Max’s progress. None of his tests showed significant changes since our last visit in December 2008 which is extraordinary especially as regards his heart valves. I have been holding my breath for so long waiting for bad news regarding the valves that I actually got choked up during the consult when the cardiologist told me there’s “a lot of mileage” left in them. Cardiology thought Max looked so good they actually took him off of one of his heart meds which was a leftover from his open-heart surgery two years ago. In fact, they couldn’t even remember why he was on it! In the very beginning when he was a baby I longed for the day when Max would no longer need medication, now I’m just happy to have one less syringe to line up twice a day. Funny how perspectives change.

 We were also able to meet several of the doctors and researchers working on what is now known as “The Max Study”, they are all very enthusiastic about their work and the results they have had to date. We learned that they have found two other children who may prove to have the same gene mutation as Max, they will be seeing one of these children in their clinic in the next few weeks. Max has been so unique for so long it seems strange that there may be other children with similar health issues.

 Tomorrow is a very early day with check-in for a cardiac MRI at 6:30 and an appointment with the cardiac surgeon at 10. Hopefully he will be equally pleased with what he sees on the MRI, if it suggests no change in Max’s aorta and/or valves we might be allowed to stop doing yearly MRIs and switch to every other year. Although this may seem trivial I can assure you that the life of a chronically ill child is measured by the number of tests and procedures they must endure. One or two less is miraculous for these kids.

Until tomorrow….