With the morning preparations and the evening rush hour and at least one meal out for enduring the trial, the trek to Johns Hopkins University Hospital in Downtown Baltimore is a daylong event. While we’re accustomed to the yearly visit to the neurology department, today was a little different. Today was cardiology.

Cardiology – just like neurology, pulmonary, and others – seems mostly about metrics. Duchenne Muscular Dystrophy is fatal – period. Full-stop. Metrics are about knowing where you are on the curve, adjusting medications, and contributing to the larger research datasets. The process of going through these appointments is a challenge to the psyche: At best, you’re not worse off than before and the ever-escalating costs of health insurance cover at least the bulk of all the specialists and tests; at worst, you learn about your decline and how things will inevitably change.

Electrocardiogram, echocardiogram, and the consult, were on the agenda for today. The reason? Routine. My son’s on two cardiac medications, and at some point it becomes negligent to keep renewing them without the checkins. We had to cancel our appointment two years ago when a snowstorm hit the area, and last year we were not taking any chances with COVID – and, yes, scheduling appointments with these specialists, such as cardiologists who specialize in working with neuromuscular diseases, can be very challenging.

What was the outcome? We’re tracking deteriorating function, cardiac scar tissue, and watching for signs of arrhythmia. Based on today’s results, the boy’s wearing a small monitor glued to his left breast for a week. It’s watching in detail for any signs of arrhythmia, to be mailed to the lab for analysis when done. Depending on the results of that, there may be a subcutaneous sensor inserted to do the same over the course of years – and that it turn may be a precursor to an installed sensor-slash-defibrillator. We need to get him an MRI to give a better baseline look of the heart function compared to what the limited echo can do, a visit with the specialist pulmonologist who deals with muscular dystrophy patients, and probably a sleep study in a lab.

Yeah… Again, these are never “Wow! Look how you’re progressing on your wellness journey!”-type events, and they are not cheap. If anything, one visit and one or two tests inevitably cascade into a flourish of new requirements, and each of them is a reminder of the inevitable, as well as a quiet, unspoken reminder of the costs in this country of keeping someone alive.

Happy December.