Having been deprived of elevators, waiting rooms, and terrible lighting for too long, we recently headed back to Children’s Hospital of Philadelphia for Jack’s semi-monthly catechism with his cardiologist and namesake, Dr. Jack Rychik.
It was the first of these follow-ups which didn’t require apocalyptic storm travel. Nonetheless, any advantage which might have been gained by fair weather simply meant the roads were packed. What god hath given, Philly drivers shall put asunder.
This visit was originally scheduled for two weeks prior, but on the appointed date Jack was jammed up with the nasty end-of-season cold that kept hanging around like a fart in a phone booth.
Following the guidelines elucidated in this post, we’d tried to keep Jack quarantined after seeing his brother splayed out slack-jawed on the couch, but the Munch eventually succumbed.
For eight or nine days, Mommy and I sucked ropes of snot out of Jack’s head as he screamed and cursed us with the damnations of Moloch.
He didn’t eat, he didn’t sleep, he didn’t smile. He wailed. He howled. He wept, whimpered, and sighed.
In retrospect, it’s hard to be unsympathetic. The first time you can’t breathe through your nose must be alarming, to say the least. How, exactly, are you supposed to know that this isn’t a permanent state of affairs?
The illness was a serious setback for the Munch. His sleep schedule was obliterated, his weight flat-lined, and the progress we’d been making on his physical development seemingly vanished.
Pre-illness, Jack had excellent lateral torso control while sitting, and I imagined we were close to getting him to roll over from front to back.
Two weeks later, however, when his PT arrived at the house for her post-illness reschedule, Jack lay on his activity mat like a sack of cement. It was as if he’d regressed three months. He wouldn’t even do side-rolls. (He was, of course, happy to socialize).
Anyway, aside from the trek not requiring a sled and a team of huskies, this latest visit to CHOP was notable because Dr. Rychik cleared the Munch for 3-month visits going forward.
This benediction was offered not because Jack is well, exactly — his residual VSD is still there, neither bigger nor smaller — but because he isn’t unwell.
It’s the kind of verdict that in the regular world would be considered a wash, a tossup — maybe even a Mexican standoff — but which counts as good news in the realm of pediatric cardiology, because in that realm anything that isn’t bad is good.
As I hauled Jack and his gear out to the car, I felt like I was moving through peanut butter. Months of cumulative fatigue from staying up every night to get the Munch an extra bottle have ground down my gears.
Perhaps out of solidarity, Jack didn’t nap in the car. I wasn’t as alarmed by that at the time as I should have been. Steeped in the orthodoxies of sleep science, I’d previously discounted the naps he’d taken in the car as junky, insufficient, unimportant.
They may have been junky and insufficient from a sleep science perspective, but having spent the day with a totally napless baby, I now say bring on junky and insufficient.
Jack was in a superlative mood when we headed out. He beamed brightly and let out one of his lively yawps as I buckled him into his car seat.
In the parking garage, the Munch’s mood was as dim as my energy level. He angrily interrogated his teething keys as we strollered toward the main elevators.
By the time we encountered Kevin — the tech responsible for check-in, weight, blood pressure, etc. — the Munch was behaving like a juvenile delinquent: grabbing things and throwing them on the floor, shredding the paper on the exam table, trying to stuff the scraps in his mouth, and shrieking like a banshee whenever his slightest whim was frustrated.
He was acting like his brother, in other words. Strikethrough. I didn’t write that. At any rate, Ryan isn’t teething. Jack is — with Old Testament wrath.
Kevin was new. I don’t know how you can go downhill from a valley, but downhill is where we went when Kevin understandably declined the Munch’s demand to grab his stethoscope and cram it into his mouth — while Kevin was using it (or trying to).
Kevin eventually became so flustered by his inability to get Jack to comply with blood pressure monitoring — even with me restraining the little bugger — that he began chanting an anxious incantation: “We’re almost done, we’re almost done, we’re almost done …”
Whether the chant was offered for Jack’s benefit or Kevin’s is anyone’s guess, but it doesn’t matter because it worked. Jack smiled and let out his little Pillsbury doughboy giggle.
Amy the EKG tech was awful. Jack hated her with the fire of a thousand suns, and frankly I couldn’t blame him.
Her insistence that the Munch not eat the EKG machine’s wires or probes was reasonable. It was her attitude that begged for an upgrade.
Let’s just say that sometimes you can know with the certitude of gravity that an individual has never had children. Or quite possibly never spent more than a couple of hours with a child. I’ll leave it at that.
Why such a person would be working in a pediatric hospital is beyond my powers of imagination, but then again so is much else.
Eventually the ordeal ended. Jack barked a “screw you” at Amy and we wheeled away from her awfulness, back to the flickering canary-colored lights of the waiting room.
The echocardiogram was up next. I imagine Jack and I must have resembled two slack-eyed zombies as we watched Ask This Old House on the waiting room TV.
Suddenly, Jack broke ranks. He began squirming in his stroller and chewing on his teething keys like they contained passionfruit nectar.
I peered at the baby app on my phone. He hadn’t eaten in several hours.
“All right, Munchie,” I said, hauling myself out of my chair. “Bottle.”
I extracted a bottle and the super thermos from the commando bag and started my milk-warming alchemy.
Then I set my watch timer and I waited, acidly observing Tom Silva on the TV cutting finger joints on a swank table saw I would never own.
“Show-off,” I muttered. “Try turning out your fancy-assed joinery on a crappy contractor saw — right, Munchie?”
Jack ignored me, obviously incensed at not being able to chew the plastic off of his teething keys.
“You know how hard it is to cut finger joints when your arbor’s too short to fit a set of dado blades,” I said to Jack. “You were just bitching about this last week.”
Sometimes I talk to Jack like he’s a retiree hanging out at a Woodcraft. The point of this one-sided banter is to encourage him to talk.
I read an article a while back that noted how little dads talk to their babies compared with moms. One of the reasons, the article speculated, was that dads thought they had to goo-goo ga-ga with the little dumplings or nix.
Faced with that apparent choice, the dads frequently chose nix and disappeared to the basement, or garage, or whatever subterranean hole they figured no one would follow them into.
Anyway, Jack is almost always delighted by our hardware store talk, and babbles back at me with gusto.
This time he shot me a glare. Apparently the bottle warming wasn’t going fast enough, because he started making a noise that sounded like a train locking its brakes.
“It’s coming,” I snapped. “I’m not god, you know. I don’t even make this stuff.”
Unsurprisingly, this explanation failed to satisfy. I checked the timer on my watch. 25 more seconds.
“Oh look, Munchie,” I said, gesturing at the TV. “Tom Silva has a Biesemeyer fence.”
Jack responded by repeatedly slamming his teething keys into the stroller seat with a rhythmic angry pant. I thought he was about to punch a hole through the seat as I scooped him up and plopped the nipple into his mouth.
“Thank god,” I said, as the Munch gulped down a river of warm breast milk. “Maybe you’ll sleep now.” I leaned my head back against the chair. “If I don’t beat you to it.”
Jack and I sat still and sleepless in the echo room. Neither of us said anything as we waited with eyes at half-mast for the echo tech.
Her name was Yin, and she walked in fresh, brimming with pep.
“Jack!” Yin exclaimed. “You’re such a pretty boy! Are you going to be a good boy for me, sweetheart?”
Her voice beamed at us like a brilliant light. Neither of us had met this woman before in our lives, and frankly we weren’t prepared for such luminous energy — bracing as it was. We stared at her, the corners of our mouths on the verge of grinning.
“And you are Dad?” she asked me.
I nodded. “That’s what it says on the paperwork.”
Jesus, I thought. Why can’t you just answer questions sometimes like a normal.
Yin dimmed the lights and sat at the echo machine. “Well, this should be over very fast,” she said to Jack. “You look like such a good boy, sweetheart.”
I didn’t know if this was Yin’s standard shtick with her patients, but it didn’t matter. Jack was spooning it up like pudding. He stared at her with the open-mouthed smile he usually reserves only for his brother.
Yin squeezed out some aquasonic gel on the Munch’s chest and began moving the echo machine wand around. Colored patches appeared on the screen.
“You’re being such a good boy, sweetheart,” she said softly.
After a couple of minutes, Jack craned his neck to look at the screen.
“Are you trying to look at your own heart?” Yin asked him.
He smiled and reached out to grab the wand.
Yin’s eyes remained on the screen. “I don’t think I need your help, sweetheart.” She smiled and glanced at the Munch. “Once you’re a little older.”
I wasn’t sure that was going to fly, but it did. Jack withdrew his tiny hand from the wand and went back to craning his neck to look at the screen.
“He’s so curious,” Yin said. “So aware, looking at everything.”
“He’s never met a screen he didn’t like,” I said.
After another minute or so, Yin withdrew the wand and placed it on its stand.
“I’m so proud of you, little guy,” she said as her fingers flew across the keyboard.
Jack smiled and let out a delighted squeal.
Unfortunately, good times aren’t forever. Yin asked me to help move Jack up on the pillow so she could get one last series of pictures.
From what she was describing, Jack’s head would be lower than his chest. I warned Yin that the Munch hates having his head below level more than I hate taking him to the doctor’s office.
Nevertheless, I picked him up and placed him in position as Yin reapplied her wand to his chest.
As anticipated, Jack started lurching and kicking on the table like a bunking bronco.
“Oh, you were doing so good, sweetheart,” Yin said.
I reached out and gently held Jack’s feet, softly squeezing them the way he likes. The tremors subsided enough for Yin to get what she needed.
“Super!” she said. “Thank you very much, Dad.”
“Happy to help,” I replied.
“And thank you, sweetheart,” she said.
Yin wiped the gel off of his chest and indicated that we could put his shirt back on. She lifted him forward at the waist and held him for me to put his shirt back on.
It didn’t go well. His collar was stuck around his skull and he was squalling.
“Oh, sweetheart,” she said with a lively laugh, “are you upset because your dad is not doing a good job?”
“Ha,” I said. This wasn’t the position I used to change his clothes. “Let’s lower him back down.”
Once he was prone again, I reached my fingers inside the collar, stretched it out, and slid it down over his head.
“You really are a sweetheart,” Yin said to Jack. He was all smiles again.
Yin explained that she had to take the echo somewhere for Dr. Rychik to review and that she’d return shortly.
“Okay,” I said. I told her the Munch needed a diaper change anyway.
“Bye bye, sweetheart,” Yin said, waving her hand at Jack.
As soon as she closed the door, Jack became whatever the baby equivalent of “asshole” is. He squawked and shrieked, fussed and cussed, kept turning sideways as I tried to fasten his diaper.
I held one hand on the Munch to keep him from rolling off the exam table as I fished through the commando bag for Big Blue, his favorite pacifier, with the other hand.
Throughout, he let me hear about it. Whatever it was.
“Knock it off, Munchie. How’d you like me to leave you here?”
He was making such a ruckus that a nurse opened the door. “Is everything all right?” she asked.
“Depends on how you define ‘everything,’ ” I said.
Yin appeared in the doorway behind the nurse. The Munch was immediately all smiles.
“Oh, did you miss me, sweetheart?” Yin asked.
“I did,” I told her.
I lifted Jack up and put him in his stroller. Yin had several more colleagues outside the door waiting to take a look at the baby in Echo Room 2 with the inch-long eyelashes.
The Munch did not disappoint. He cooed, he giggled, he smiled for all of them. He hammed the place up like Christmas dinner.
One of Yin’s colleagues put her hand on her hip and said to Jack, “You were just acting up for daddy, weren’t you?”
Jack laughed and looked away.
“I’m old news,” I said with a sigh. “He knows I’m not gonna leave him here.”
I believe several birthdays passed in the space of time we waited in the exam room for Dr. Rychik.
Jack had become like a drunk at a party: one moment he was sobbing, the next moment he was belligerent, then the moment after that he was hilarious.
I fished my phone out of my pocket and looked at the baby app.
“Holy shit!” I blurted out.
He’d been awake for five hours.
I bent down to peer closely at him. He gave me a short bellow and went back to eating his stroller harness.
Finally, Dr. Rychik came in the room with a sharp-eyed blond woman wearing a white coat and holding a slim laptop. He introduced her as Dr. Buchanan, a cardiology intern at CHOP.
“Do you mind if Dr. Buchanan sits in with us?” Dr. Rychik asked.
I didn’t mind at all, but even if I did I couldn’t very well say so. That this occurred to me was almost certainly a byproduct of me being pissed off at Dr. Rychik for making us wait a full nine innings. The truth was that he could have brought Donkey Kong in with him and I would have said let’s get on with it.
“Not in the least,” I said. “Nice to meet you.”
Dr. Buchanan and I shook hands. “You too,” she said.
“So this little guy is Jack,” Dr. Rychik said to Dr. Buchanan. “Approximately 33 weeks old, diagnosed prenatally with aortic atresia and ventricular septal defect.”
Dr. Buchanan grabbed a chair and took notes on her laptop as Dr. Rychik sat at the exam room computer and pulled up Jack’s deets. I sat with the Munch balanced on my knee. He watched the two doctors with intense curiosity.
“Jack underwent a biventricular repair,” Dr. Rychik said “— basically a Yasui-type operation — when he was five days old, I believe?”
“Six days,” I said.
“Thank you. Six days. The operation consisted of aorta to pulmonary artery anastomosis, arch reconstruction, VSD closure to the neoaorta pulmonary artery, and a right ventricle to branch pulmonary artery conduit.”
Dr. Buchanan’s fingers typed furiously as Dr. Rychik summarized the Munch’s brief, albeit crowded, medical history.
“Unfortunately,” Dr. Rychik continued, “Jack had early conduit failure with narrowing. When his old conduit was replaced it resulted in alteration of loading conditions and the unmasking of significant intramural VSDs. He then went to the cath lab and had device placement to attempt to close these VSDs, but some residual shunting still remains.”
Dr. Rychik turned from his computer to Dr. Buchanan. “The residual VSDs haven’t shrunk, as we might have hoped, but haven’t enlarged either.”
He turned to me. “The good news is that if the VSDs were to have enlarged, I would have expected them to have done so by now.”
I gave Jack’s head a smooch. “Way to hold the line, Munchie.”
“Let’s take a look at him,” Dr. Rychik said.
We moved to the exam table. Dr. Rychik examined the Munch first and then made way for Dr. Buchanan to examine him. Jack used all of his best moves on her.
“He certainly isn’t shy,” Dr. Buchanan said with a grin.
“Yeah, the developmental follow-up people aren’t concerned about his social skills,” I said.
We sat down, and I filled the doctors in on the Munch’s day-to-day.
Dr. Rychik listened. “So, I believe that Jack is doing well,” he said. “Well enough that I think we can move these visits to three-month intervals.”
Thank god, I almost said.
“At this point in time,” Dr. Rychik said, “I would love to see him grow more. My hope is that with some increased calories we might be able to get him to jump his growth curve.”
Dr. Rychik turned to Dr. Buchanan. “Our hope is that, since the VSDs appear to have stabilized, as Jack gets bigger they’ll become relatively smaller — thus less significant.”
“We’re putting food in front of him every chance we get,” I said. “I’m still staying up to get him an extra bottle every night.”
“How’s that going?” he asked.
“It’s a killer,” I said.
He nodded. “I bet. Is he taking the bottle?”
“Oh yeah,” I said. “Good to the last drop.”
“Hmm.” Dr. Rychik cradled his chin and thought for a moment. “Obviously, we don’t want you to run yourself down. This is a marathon, not a sprint.”
I nodded. If some alien entity abducted Dr. Rychik and tried to pass off an impostor, they’d have their work cut out for them.
“I know what you’re saying,” I said. He wasn’t thinking anything I hadn’t thought already a million times. “But he needs the calories.”
Dr. Rychik made a gesture that was part nod, part shrug.
But no one added anything. There was nothing to add. He needs the calories. It is what it is, and until further notice, his life depends on it.
So his mother gets up early while I stay up late. And miles to go before we sleep.
I wheeled the Munch into the main elevator and pressed the parking garage button with my elbow — a remnant of CHOP’s anti-germ conditioning from way back.
“Whaddya think, Munchie? Should we go to Dalessandro’s and get you a cheese steak sandwich?”
Jack sat glass-eyed, holding his stroller harness in his mouth like a pan flute.
“Yeah, you probably don’t have enough teeth yet,” I said.
A woman got on at the first floor and, seeing Jack, exclaimed, “Boy, I wish I could sleep like that.”
I leaned around to see what she was talking about. The Munch was slumped in the corner of the stroller, snoring softly.
I chuckled and leaned back against the wall of the elevator as it descended.
“Yeah,” I said. “Me too.”
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