Conversational Land Mines, Medical Edition

“It’s been two years since the boy’s routine clinic visit,” the doctor reminded us with an obvious, intentional tone; “It’s supposed to be every year.” I tilted my head and squinted my eyes a bit ~ seriously? “Well, there was that small matter of The Pandemic…”

My wife interjected, “We discussed tele-medicine as an option, but …”

“Yeah, there’s not much we can do for these kinds of appointments through a camera.”

“Well we were locked away in our home for the year. Did we miss you dropping in for a house call?”

Alright, so it wasn’t as tense as it might read, but the exchange did occur. The fellow looked at the chart, saw the date of the last appointment, and instinctively commented.

Earlier in the appointment, we were introduced to a young doctor learning the ropes who was jokingly given six minutes to collect my son’s history since the last appointment plus current conditions and concerns ~ standard fare both for the newbie (it is a university hospital) and the history taking. The young doctor asked the usual questions, eventually leading to snoring — it’s important to check on respiratory function. “Yes, light snoring, particularly when over-tired.” “Do you sleep well?” “Sometimes I wake up after an hour, then go back to sleep.” “Why do you wake up?” “When I hear footsteps…” “That’s me checking to make sure he’s tucked in and his urinals are empty.” “CPAP?” “No.” “Do you wake up with headaches?” Son, wanting to please, “Well, sometimes, I guess.” I ask, “Is that when your tea is late?” “Yeah.” Wife and son need their morning doses of Irish Breakfast Tea… Doctor: “We just need to keep tabs on respiration because…” “I know. I just want to make sure you’re considering all information and alternatives.”

The doctor rolled my son forward a bit in his wheelchair and pulled up his shirt to check his spine. “Huh… still pretty straight. Good!”

The very first time we met following our transfer from another major hospital system following the retirement of their lead, this fellow began asking questions that focused fairly intently on my son’s spine. Within a few moments, he was discussing spinal fusion to help boys with this type of muscular dystrophy. We’re several years later now; it’s always a surprise.

My son was wearing his favorite “I paused my game to be here” tee-shirt today. The doctor zeroed in on that as well, maybe remembering that my boy is an avid video gamer. “Make sure you get away from the games and go out and do things!”

The young doctor who took my son’s history interrupted: “Actually, he is becoming very engaged with gaming friends, including the MDA’s own gaming outreach…” She understood the intent: It’s importantly not to just atrophy without social engagement; he, however, locked on the form and shut her down.

Coincidentally, some family friends have a daughter checked in at the hospital with a mystery illness. Different teams are seeing her as they do the “Dr. House” diagnostic things to find what’s eluding everyone. Wife and son payed mom and daughter a visit while I visited the cafeteria and found myself a cup of coffee — only room for two visitors.

Not too long after I was settled in the courtyard, my wife sent a text message, including a picture of my son playing Mario Kart with the young girl. She was thrilled to have someone there who actually knew how to play rather than a parent making an effort and muddling through. I told them to take their time ~ I could get more coffee. I was happy to see my son and his video games making connections, helping another kid.

If all of this points to individual projections, here is my own: Dealing with the medical system these days can be absolutely treacherous, particularly if you know yourself and you know how you want to live. There are undoubtedly diagnostic decision trees and developmental (to degenerative) milestones, and the staff is ready, sometimes hair-triggered, for major actions in response to subtle patient comments. The hospital experts know Everyman’s Son; we know Our Son. It can be a real challenge for each side to hear the other.

Except for some statistical variance, we all know how this ends. But what we also know is that Duchenne Muscular Dystrophy is a coarse family of disease. It has a dominating presentation and timeline, of course, but there are genetic variations that are only recently beginning to be categorized. From the last hospital’s genetic sequencing and studies, they indicated that my son has a slight variation on the norm that slows onset and retains some strength longer in some key areas. That includes, in this case, that there is no race to spinal fusion surgery, which in turn would have hampered his independence and maintaining ability to do a lot of things on his own, leading down a different path of degeneration — the one the Everyman takes and the textbooks prescribe.

And still, every visit, I remind myself it wasn’t so long ago that we were applying the leaches and balancing the humors…

On today’s drive home, though, we chatted about what it might be like to visit hospitals and play video games with kids.

By Joe

Puzzle Wrestler & Mountain Herder. Math & Computer Nerd since the 80s. Longtime linux (current debian, ubuntu, raspian, centos, gentoo), currently fighting feebsd. Over-complicates networks for fun, occasionally secures them for profit. Develops own tools & services (cli, web services, and lately some android). Degrees in Math, Belts in Aikido. Zen, Motorcycle, Ham Radio, Homebrew (Ale, not Radio), Coffee & Tea, some Mandolin & Fiddle, MDA Advocacy (son with Duchenne), …

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