If it's Tuesday it must be.....

......dermatology, cardiology, echo-cardiogram, EKG and cardiac MRI. Tuesdays at Hopkins are notoriously long, unforgiving days because this is the day most of the pediatric clinics hold their office hours. Heaven help the medically complex child (aka Max) who has to see several of these specialists who just so happen to be spread out over a radius roughly six city blocks in all directions.

Our first appointment of the day was at 8 AM and we finally dragged ourselves out of the hospital's main doors after 5 PM and a harrowing MRI. It was an emotionally draining day. Although all the news we received was what we already knew it never gets easier hearing that your son is a conundrum. Everyone puts a positive spin on Max’s uniqueness and they’re right, he is a miracle who just so happens to be “writing his own book”. The dermatologist actually asked us if he could present Max to his class during our next trip to Baltimore, he excitedly told me how these medical students might never see another Max again. I’ve gotten to the point that my son’s “guinea pig” status no longer bothers me, I too have a new, positive spin: he’s a “pioneer” not a lab rodent! Whatever helps me get through the day right?

On the cardiac front, no surprises – the aortic valve continues to leak severely and so we have confirmed a summer in Baltimore. Michele somehow convinced himself that we’d get another reprieve but alas it’s not to be. We’ll see the cardiac surgeon on Friday and talk specifics like dates, what type of valve (mechanic, donor, or if we’re really, really lucky a repair of Max’s own valve), and likely post-operative care. We’ve known for a while that this train was coming and today we heard its whistle so now we know that it’s not too far off. Doesn’t make it easier, just makes it real.

I know all this sounds pretty crappy but the day got even worse when we got home. We were barely through the door when the eye surgeon’s scheduler called to say that the anesthesiologist on service tomorrow decided at 4 o’clock that she doesn’t feel comfortable caring for Max and so they are scrambling to figure out how and when they can operate. All we know is it definitely won’t be tomorrow. I understand the fact that on paper Max is frightening and I guess I should appreciate a physician who is willing to recognize when they’re in over their head but I’m frustrated to know that we may not be able to do anything until Friday which means two things: one, Max will not have the recovery time we wanted before we fly out on Sunday and two, now I have to figure out how to reschedule the cardiac surgeon. Sometimes I feel like I’m trying to choreograph a production of dancers who refuse to be choreographed. In my frustration tonight I’ve been mad at the world, bit my poor husband’s head off, and otherwise cranky.

And so another Tuesday at Hopkins draws to a close and for this I am thankful!

Waiting for Cardiology.....Can you tell it's still early in the day?

Chillin' in the lobby between appointments, definitely later in the day!

Are we done yet?