Jack’s most recent cardiology checkup was a breeze, a snooze, a lazy lunch. Not something either of us would engage in willingly, mind you, but a far cry from the gruesome slogs that have become a staple of the genre.
Because the visit itself was relatively painless, naturally the outcome had to be deflating and shitty.
Feel free to skip to the end if you’d rather front-load your deflating and shitty. As far as the actual visit was concerned, however, a few things seem to have made a difference:
- Jack can now efficiently cruise the hospital on his own
- TV has finally become the proper hypnotic it should with children his age
- Elmo is a hell of a drug
We checked in quickly to the Cardiac Center without the kiosk machine eating our insurance card. The waiting room was somewhat lightly attended, so Jack mostly had the space to himself. He slalomed between the empty chairs and spun around gleefully in the middle of the floor like Julie Andrews in the The Sound of Music.
I barely had time to unholster the commando bag before we were called back for weigh-in. I had just unwrapped a snack bar for the Munch, so I braced myself for a fight.
“All done, snack bar,” Jack said. “More snack bar later.”
I peered at my child as he scurried boisterously toward the door to the back — a transom he usually regards as the gates of Hell.
Crap, I thought, he must be really sick.
On the contrary. At weigh-in, Jack seemed amused at being put half-naked on the hard plastic scale.
Then the tech cuffed him to take his blood pressure — something that usually reminds the Munch of being smothered by an octopus.
Not this time. A slight smirk. He leaned over to study the gauge’s needle as the cuff squeezed his arm.
I didn’t have time to ponder the possibility of alien abduction. EKG followed right away. No being shoved back into steerage for an hour to stare at the flickering fluorescents.
Now I was beginning to wonder if we’d been mistaken for other people. I mean, I don’t look like a point guard for the 76ers, but who the hell knows what people think.
More happily, the EKG might as well have happened to someone else. Jack made not a peep.
When the EKG was finished, I took the Munch’s hand and began to shuffle back to the waiting room to abide with the rest of the groundlings.
“No, you’re this way,” the EKG tech said. She pointed toward the exam rooms.
I stared at her. “We haven’t done the echo yet.”
She smiled and shrugged. “Dr. Rychik wanted to see you first.”
The Munch and I stood in front of the exam room’s full-width window and watched the bustle of high-rise construction taking place across Civic Center Boulevard.
I pointed out the graceful brickwork of the UPenn Anthropology building’s curved rotunda.
“Now, that building is kind of unique, Munchie. It was completed in 1899. It was designed by the most famous architects in Philadelphia. They all taught at Penn. That’s a school. Anyway, it combines touches of Arts and Crafts with Eclectic style.”
Jack pointed at a SEPTA bus below. “Loud,” he said.
“Hello, hello,” we heard from behind us.
We greeted Dr. Rychik and sat down.
“Are we not doing an echo today?” I asked — more than a little expectantly.
“No, we will,” he said, pulling up Jack’s file on the computer. “But I think we’re getting to the point where we can expedite these visits.”
When I recall the moment in my mind, Dr. Rychik’s utterance precedes a world-shuddering boom, and I’ll admit that I’m disappointed in myself for not recognizing the kismetic disaster that utterance conjured.
Why? Because I am far too superstitious, paranoid, irrational, possessed of cognitive distortions to have done what I did when Dr. Rychik made that airy prouncement, which was to sit and nod affirmatively like we all, finally, deserved to hear that news.
Hear that, Munchie? We’re becoming normal.
No. I should have cringed when Dr. Rychik said what he said. I should have let out an unctuous rasp of pain. I should have jumped up and starting knocking on the exam room door like a woodpecker.
No matter that Dr. Rychik’s physical exam on this day was glowing. No matter that the Munch’s height is in the 71st percentile, or that his weight is in the 25th percentile — when he wasn’t even on the fucking chart for either until he was almost 10 months old.
Never mind that his ox sat is 100%. As an aside, my oxygen saturation isn’t 100%, I can tell you that.
Forget that his lungs are clear to auscultation, that his sternotomy scar is clean and well-healed, that his abdomen was soft, that there was no hepatosplenomegaly. Omit that his extremities were well perfused, and there was no peripheral edema.
Ignore that there appears to be no evidence for any residual VSDs, or that this little 2-year old banshee, who is, according to Dr. Rychik, “doing clinically very well, and growing and developing nicely,” runs around from dawn to dusk, laying waste to his (admittedly middle-aged) parents and even putting his 6-year old brother’s face on the floor from time to time.
Never mind any of it, because in my world you don’t talk like that, or accept words like that, unless you’re craving a cosmic beatdown.
Sure enough, Dr. Rychik contacted Mommy several days later to give her bad news. Here’s how he put it in his follow-up letter to Jack’s pediatrician:
On today’s echocardiogram, I am detecting some degree of progression of aortic insufficiency. The valve that is leaking is the pulmonary valve, which is now the systemic valve due to the patch closure of the VSD to the reconstructed aorta using the pulmonary artery and the pulmonary valve as the new aortic valve. The jet is somewhat eccentric and it is difficult for me to gauge exactly how much regurgitation there is. The left ventricle, however, remains somewhat slightly dilated.
I am recommending that we proceed with the next step evaluation, which would be a cardiac MRI. This will provide us information with gauging the actual degree and quantity of regurgitation through the regurgitant fraction measure, as well as a good sense of LV dimensions and function.
Parents of children with heart defects develop their own coping strategies. The strategies you choose will depend on your needs. Maybe they’re needs you didn’t know you had, because this thing will unmask you. Some of those strategies are relatively unique, some of them are reproducible. Most of them are probably kind of crazy.
What are mine? Nothing exotic. Standard tropes of order, control, etc. That’s the unmasking part. Maybe you’re not as okay as you’d thought with being out of control, being powerless, and so on.
And maybe you’re tired, and your grip loosens a bit, and you slack on some of the mantras and habits you use to keep your shit together, because maybe you’re eager to not need to hang on so tight anymore.
Sure enough, when Dr. Rychik expressed his casual optimism, I didn’t blink. I had the same reaction every stupid sumbitch does when he thinks he’s entitled to something he hasn’t earned.
Cool. This is like the new normal. ‘Bout time.
I was even stupid enough to tell everyone at Thanksgiving dinner that I was grateful for “good health” before the checkup’s final report came in. If that isn’t pleading for a cosmic ass-whipping, I don’t know what is.
The irony is that apparently I was right about this being the new normal, as Dr. Rychik himself said to Mommy during their call; I was just bassackwards wrong about what that new normal was.
At some point during their phone consultation, Mommy expressed bewilderment at this disquieting turn of events after a seemingly meteoric trajectory of good news and vigorous health.
Well, Dr. Rychik said, it’s true we’ve had a good run since Jack’s cath procedure. And this latest development would seem to be a correction to that stretch.
What we need to expect, according to Dr. Rychik, is a different new normal from the one I imagined for Jack and for us. What we need to expect is one in which periodic bad news punctuates long, unexceptional stretches.
Believe or not, in the subculture of kids with congenital heart defects, the above state of being Dr. Rychik describes would make us altogether very lucky and very typical.
I’m sorry, Munchie. For a moment there I thought we were on our way to transcending typical, and just being normal.
Heartbreaking but eloquent. My heart goes out to you guys. ~Joanna
Eloquent and profound as always, you are an amazing writer. Just so sorry for the content/reality check. : (
Expectation is a word that has made and broken entire civilizations so it’s a good approach to resolve to a normal. We are all accommodating what that is, never as we wish it to be. Take care my friend.