By Ryan Yousefi
By Chuck Strouse
By Terrence McCoy
By Terrence McCoy
By Terrence McCoy
By Michael E. Miller
By Kyle Munzenrieder
By Michael E. Miller
He's our skinny one, and he has no idea what he's in for.
That's part of what makes it hard. Seeing him looking so healthy, watching him swing on the monkey bars. He gets his legs going like a crooked pendulum, lets go with one hand and stretches forward, skips a bar, and grasps. That gives him more momentum and he skips two. Covers the whole stretch in three grabs, like a furless gibbon. Turns around and comes back. He'll do it for a few minutes, back and forth, before dropping onto the sand. Mothers at the park watch him admiringly, often say kind things ...
Joseph Giacomo Mine is a lean little six-year-old. Secco (Skinny) in his mother's idiom, Marchigiano, from Adriatic central Italy. His build has always distinguished him from his two brothers, Bruno and Tobias, one a year older, the other a year younger. Those two were chubby, robust babies and are little muscular guys now. No fat on either of them, but plenty of solid meat.
Joe was born thin, in Antigua, Guatemala, five weeks premature. He looked reptilian, or like an old man. A gangly homely loose-skinned guy was prime minister of Italy at the time, Lamberto Dini. Joe looked like a miniature version of Dini, and we -- my wife Nicoletta and I and Joe's godfather Rodolfo, who came from Italy for the baptism -- called him Lamberto sometimes.
Now he's beautiful, Joe is. He's got big round brown eyes and very long, thick eyelashes. When he was three and learning how to swim he'd go underwater and come back up and open his eyes and his upper eyelashes would be stuck to his cheek and he'd be looking through these lines of stuck eyelashes until he'd blink a couple times, unsticking them. You probably think that's bushwa, a doting father's sentimentalism ... It's true.
He was an ugly baby, though. "Madonna, come e brutto [Holy Mother, how ugly]," Nicki would laugh. It was funny for us, because Bruno had been so angelically handsome since the day he was born. But we lovedour little frog. Maybe even more so, because he had a little something wrong with his heart.
It's called VSD, ventricular septal defect. Congenital. A tiny hole in the wall between the ventricles. The doctor who examined him after birth heard it as a murmur. It's a loud murmur in Joseph's case, and that's good. It's loud because the hole is so small, less than two millimeters in diameter and you can hear it easily, without a stethoscope. You put your ear to his chest and you hear the thump of the heart and between beats a "fsssst," which is a jet of blood shooting through the hole from the left ventricle into the right. It's under a lot of pressure, because of the hole's extremely narrow diameter.
The pediatric cardiologist in Guatemala was named Guillermo Gaitan. We took Joseph up from Antigua to the capital a couple times in the first two years of his life to have him examined. Shortly after Joe's birth, Dr. Gaitan told us that in about half these cases, the hole closes by itself during the first eighteen months of life. So we were encouraged by that, thinking it would probably close.
It didn't. But that was okay too. Gaitan said not to sweat it. The hole was so small it barely diminished the efficiency of the heart. That we should have it looked at every couple years, an echocardiogram, just to make sure it continued to be benign, and that it probably would never cause him any problem. Joseph did remain flaquito(thin), but not alarmingly so. On the charts. Gaitan said that with something like this, the heart has to work slightly harder than does a perfect one, and that uses up some calories, and sometimes these babies tend to be thin.
We weren't worried. The boy ate and grew and ran and played. He seemed fine. Nicki's father had been thin his whole life, with narrow shoulders and stick legs. That was Joseph's type. We looked at it as an inheritance from Nonno Livio (Grandpa Livio).
Toby was also born in Antigua, and several months later we moved from Guatemala back to Italy, where Bruno had been born. After we'd been there a while we took Joe to a cardiologist. He checked him out with the echo, the same apparatus used to examine a fetus in the womb. This Italian doctor had a daughter, at the time eighteen years old, with a tiny VSD very similar to Joseph's. He told us about how his daughter had always been an outstanding athlete and was a member of the regional volleyball team, a serious competitor who played in tournaments all over the country, and that this was nothing to be concerned about.
"You'd do better to not even consider it a pathology. You can practically forget about it. He can do whatever he wants, even become a marathoner," he said.
"Should we have it looked at every couple years?"
"You can have it looked at every two years, every five, or every ten years. It's all the same."
Well, damn! That's some great news. We could pretty much put it out of our minds, and we almost did. We moved back to Miami. As I say, Joe was healthy and active. He still is. He's down at Carver Elementary as I write this. And he'll come home this afternoon and climb the frangipani in our yard like he does almost every day, keep going up until we tell him he's too high. Then he'll come in and wrestle with his brothers. The whole regular little-kid routine.
But by last March, we'd scheduled him for surgery.
What happened was that Joe's Miami pediatrician suggested an eminent pediatric cardiologist at Miami Children's Hospital named Anthony Chang (now at Texas Children's Hospital in Houston). We took him for a full checkup. EKG, echo, blood tests, everything. And he looked good.
But Dr. Chang, in his handsomely appointed offices, described a condition sometimes associated with VSD. It involves growth of extraneous muscle that is a kind of scar tissue on the inside of the ventricle. If this tissue grows and keeps growing, it can reduce the volume of the chamber, making the heart year by year less efficient, oblige that ventricle to work harder and thus get bigger and harder, just like it was pumping iron instead of your life's essence. This is called hypertrophy, and it's bad. Or worse, the muscle can grow in a band, toward the center of the chamber from the wall of the ventricle, all around the inner circumference, and eventually choke it off. That will eventually produce heart failure.
At first it was just a possibility, Dr. Chang said. Though he did say he saw on the echo the faint beginning of something that looked like it might become troublesome. We should have an echo done annually, to keep tabs on how this possible condition was progressing.
Joe had had only non-American doctors before. They'd all been from developing countries, except one, the Italian. And he, the sole G7 First Worlder in the lot, was the only bad one. He'd missed by a life.
Chang was right on the money. What he said might happen, happened. A superb diagnosis of something that was hardly there, two years in advance.
The man who called for surgery, Joseph's latest cardiologist (Chang had moved on), also made a favorable impression on us. He's Iraqi. Abdul Aldousany, down in Kendall. I picked Joe up in mid-January after school and drove him there for a routine checkup.
My son knows he's got this little hole in his heart.
"Where are we going, Dad?"
"To the cardiologist. For a checkup."
"To the hospital?"
"No, just the doctor's office."
"Will he give me a shot?"
"No. Nothing will hurt. They'll put those little stickers on you and the machine will draw lines on paper from your heartbeat. Then he'll put some of that jelly on your chest and rub it around with that thing, like a scope, that lets him see your heart."
"To check the hole?"
"Dad, what happens if it gets bigger?"
"Well, I don't think it will. Nobody ever mentioned that. But if it did, I guess we'd have to get it fixed."
That was it on that subject. He saw a limousine or a punchbuggy (VW Beetle) go by, or something else he was interested in, and the subject of having to fix his heart was dropped. It fell completely from my mind, too. I wanted it to.
The nurse did the EKG. Then we went into another room and Joe lay down on another examination table and Dr. Aldousany came in and proceeded with the echo. I'd seen a few of these by now, between cardiograms on Joe and the various sonograms of my unborn sons, and was able to follow them pretty well, visualize what we were looking at. The vertical line of septum separating the ventricles is clear. He switched on the color coding, which shows the blood at varying degrees of pressure in gradients of color, and you could see the pulsing stream shooting through the hole. It looked as tiny as ever, which is what I expected to see. So much so that I wouldn't even say I was relieved. It was status quo. Normal.
But the doctor was quite intent on the screen. Joe is good at this, and was staying still. If he'd shift a little, Aldousany would say, "Easy Joseph, don't move." And he was looking at that right ventricle, the one that pumps deoxygenated blood up into the pulmonary artery, which carries it to the lungs to get recharged with the good O that keeps us going. And I could see clearly the pulmonary artery and the valve at the base of it that was opening to let the pumped blood in. Not far below that valve, about two-thirds of the way up the ventricle, was a white line almost across the chamber, thicker at the ends where it attached to the wall, and thin as a pinstripe in the middle.
As I said, I've seen several of these echocardiograms and was familiar with the basic layout of this miraculous little pump. But I'm no heart doctor, so I still wasn't alarmed, and I pointed to the line across the ventricle and said, "That's supposed to be there, right?"
He didn't look at me. He kept looking at the screen and said softly, "No. That's the problem."
He did a very thorough examination. The echo itself was well over twenty minutes. He checked everything out. He put the color coding on again and pointed out how it changed drastically, from orange to blue or blue to orange, on either side of that line. Which was blood being significantly slowed down. It was still getting out and getting to the lungs and getting replenished. But not at the rate it should be. He explained this to me calmly, and in terms that would not sound bad to Joe.
He wrapped up the examination and I wiped the jelly off Joe's bony breast and put his red Pokémon T-shirt with the Japanese script back on and we went down the hall. I suspected by now that something maybe Joseph shouldn't hear was going to get said, so I told him to go back out to the waiting room to look at the picture book of dinosaurs.
He loves dinos, and has extensive knowledge of them for a six-year-old. He can describe at least a dozen by name and characteristics -- sauropod, therapod, carnivore, herbivore. Triassic or Jurassic or Cretaceous. If you ask him what he wants to be -- in fact Aldousany had just asked him -- he'll answer: "Paleontologist," with a slight Italian accent ("paleontoll-o-gist!"). Though these boys are thoroughly gringoized after three-and-a-half years in the States, they still say some words in a more Italian way, like aereoplane instead of airplane. Anyway, Aldousany didn't understand what he'd said, so Joe had to repeat it.
"Wow," said the doctor. "That's cool. Most boys just say fireman or cowboy or something like that."
Joe went out to look at the dinosaurs, and I closed the door as the doctor walked to his desk. I was nervous now: "You know Chang mentioned the possibility he might need surgery someday." Aldousany turned around and looked me in the eye without the slightest trace of doubt: "Oh, he needs surgery."
When he said it, a little yelp like a puppy's rose up in me. I was unable to suppress it.
I made a stiff-fingered vertical sign on my breast and said, "But they won't have to open him up, will they?"
He nodded. "Open heart, yes. That's the only way to do this."
We waited until six days before the operation to tell Joe. The Thursday before the big Wednesday, both Nico and I picked him up at school. Bruno doesn't get out until an hour later and takes the bus home, and we'd left Toby for after-school care at his preschool. So we had some time with Joe alone. It was drizzling. As we were going into the house I said, "Joe, let's sit down here on the porch for a minute, because Mommy and I have something to talk to you about."
"What?" he asked, in a slightly put-upon tone, as if he were anxious to get inside to do something he'd been thinking about doing, like look at his shark teeth.
He sat down. The leaves and fronds in the yard were wet and glistening and dripping, the bark black on trunks and branches. The temperature was perfect and the terra cotta tiles of the porch felt cool under our butts.
"Joe, you know that hole in your heart?"
"Well, we've been talking with some doctors. And they say it has to be fixed."
"Yes. The hole has to be closed. 'Cause it's making your heart not work right, and that could give you a problem if it's not fixed."
His mother chimed in in Italian, which is the way she speaks to them, and what they speak to her: "Fixing it will make you even more healthy than you are now. Piu forte [More strong]."
Since we were sitting in a row on the same broad step, we were all looking out into the yard. But I was glancing at Joe from the side, trying to get an idea as to how this was going down.
He was very concentrated and intent on what we were saying, gazing out and not up at either of us. It looked to me like he was contemplating the drizzle, a boy sage, and that this sublime meteorological phenomenon was taking shape in his mind as a line of preternatural poetry. His hands were clasped and resting on his bare knees, and his fingers were working. Not frantically, but he had a good grip, twining around.
"What do you think about that?"
"Okay," he said. And we sat there silently for several seconds ...
"But how do they fix it?"
"They sew it up, I guess. Or put on a patch."
"But how?" he repeated. And it was clear from the perplexed and still-intent expression on his face that what he was asking was, "How do they get to my heart, which is inside me?"
"Remember when you got the stitches in your forehead," said Nicoletta. "They'll make a cut like that, on your chest. But you won't feel it at all. You'll be completely asleep and not feel a thing, then they'll sew you up again like they did with the cut on your head."
The afternoon before the surgery, Joe's friend Daniel from school came over. They were outside messing around, and I stepped out on the porch and overheard Daniel tell Joe, who had been absent, undergoing the pre-op tests, that the kids were talking about him on the playground, about his imminent surgery, and how Zoe was sad, and that some of the kids were saying they would not have to cut Joe at all.
"Oh, no," said Joe, matter-of-factly. "They cut me. With a knife. Right here," and he made a vertical line down his chest.
He went to bed as always that night. Unafraid. Not even anxious. Instead of pajamas, I put on his comfortable long-sleeved T-shirt and some shorts, because we were going to be getting him up early, around 6:00, and I figured I'd just carry him out to the car and lay him down in the back seat and he'd wake up on the way to the hospital, which is ten minutes from our house. He slept great.
Nicoletta and I didn't. It took us a long time to fall asleep, and our rest was fitful.
The clock went off at 5:15 and I jumped up like it was a fire alarm. Nico and I had coffee and showered. She had prepared a bag with stuff for us, some food and extra clothing, because we didn't plan on coming home until sometime the next day. My mother had come down from Tampa, and she would stay with the other two kids.
At about 6:15 I picked Joe up and carried him to the car.
He was still drowsy when we reached the hospital, so I carried him from the parking lot. But he pretty much woke up by the time we reached the door, and he walked in. We went up to the second floor, to the surgery registration office. The paperwork had been done, so it was just a matter of giving our names to the secretary, and passing into the waiting room.
I was surprised to find it crowded. There were about fifteen people in there, mostly mothers with their kids. This waiting room was for all kinds off surgery, not just cardiac. Three little girls were there for facial surgery, or followups. Two of them were about three years old, and the other was only about one. They had varying degrees of disfigurement; the baby and one of the toddlers had already had work done, showing quite a bit of reddish, healing tissue. One of the girls was black, one was Latin, and one was redheaded, like her mother. The African-American girl had not had any surgery yet. About a third of her face was taken over by growths like bulbs, from one side of her nose across her cheek to her chin and up around one eye. From the scars or healing tissue on the other girls, I imagined that they had probably had something like that removed.
Even though you're dealing with your own fears about your own child, when you see a pretty little girl who wants to smile but is judicious about it, with much of her face made ugly by gone-crazy tissue, it makes you sorry for her, and it makes you feel a great deal of admiration for her mother, who so obviously loves her. The other mothers knew the unoperated-on girl too, and there was easy exchange among them, and between the two little girls who'd gotten out of their strollers.
Joe was playing in a toy car. So Nico and I were free to observe these other families who were dealing with their dramas. The black mother and the Hispanic mother and the redheaded mother were very friendly, had obviously spent time in waiting rooms, maybe this same one, together. And I thought, Now there's a bond, a kinship among these women. Nobody knows how they feel except each other. It was a true sisterhood.
Because heart surgeons work early and are kind of at the top of the ladder, I guess, the first name to be called was Joseph Mine.
For most of the several weeks leading up to this moment Nicki and I had believed -- without being able to say why -- that we would be with Joe, holding his hand, right up until the time he was put completely under the anesthesia. The idea had comforted us.
It wasn't the case. We'd found out a few days before. He'd be conscious when taken away. But it was a particular kind of consciousness. I sat him on the bed, took off his clothes, and put a small lime green hospital gown on him. A nurse took his blood pressure and temperature and chatted. The anesthesiologist escorted me aside.
It was getting to be time to go. We were standing around the bed, and the nurse gave Joe a little clear plastic shot-cup of groovy juice. She told him he had to toss it back, gulp it in one swallow, and he did just that. She also told him it was going to make him feel "silly."
I wonder myself what that stuff was. Within five minutes he was goofy-groggy. He smiled and his head lolled a bit, his speech a little slurred. He was now drunk and fearless, and we both gave him a kiss.
He lay back and they wheeled him off.
I don't know if this kid is normal. I mean, I'm astounded by the fact that never, not once, in the days and hours leading up to his operation, in the week he'd known about it, did he have a moment of discernible fear or even anxiety. Both Nico and I had expected and been preparing for the times he'd get choked up and fearful and whimper that he didn't want them to do this to him, that he was scared. We thought maybe the night before. But no. Not even in the pre-op room. No fear. No hugs or reassurances.
He didn't need that.
If we'd been asked beforehand, both of us would have said Joseph would be the one of our three most likely to fall prey to anxiety, and to show his fear. He's the one with the most fertile imagination, the most sensitive to background emotional vibes, and the least "tough" in your basic old-school backwoods scheme of things.
But he proved himself the toughest of all of us. A rock.
For me, the worst time was what you might imagine. About an hour after they'd wheeled him off. Shortly after Nurse Jane had come to advise us that he was completely under, and they were going to begin. We'd been sitting in the waiting room up on the cardiac surgery intensive-care wing, the big room with oversize chairs that at night the parents can extend into beds. After a while I got up and went to a big window that looks down on a parking lot for the doctors, and leaned on a rail there. I was looking down at the cars shining in the bright hot sun, the fronds of the palms waving, their rustle inaudible. You've been resisting letting your thoughts become visual, but when you know these are the minutes when they've bared your boy's breast and are sawing into it ... well. I leaned there and started crying. No big chest heaving or flood ... just a couple of thick beads of desolation.
My back was to her, but Nicki saw what was going on. She came over and hugged me from behind, and said everything was going to be okay.
You know, I knew that. That wasn't what was making me feel so bad. It wasn't fear. I hadbeen afraid in the previous weeks. The night Joe and I came home from the cardiologist in January, I was sleeping, it was the middle of the night, and I woke up with a start and thought I'd just had the worst nightmare -- but it was no dream. Fear was there for me until the previous day -- then, from somewhere, I had the sense that Joe would be fine.
But what I felt anyway was sadness. I was dejected that Joe had to go through this, and we -- I -- couldn't go through it for him. Maybe that substitution impulse defines fatherhood?
So we'd been dealing with these things for several weeks. And were still dealing with them, Nicki and I, there in the waiting room. After a while, Jane, a fine woman, came back and told us they were operating, that he was on the heart-lung machine, and that she'd be back from time to time for updates.
We weren't the only parents on the ward. In the few hours since we'd arrived at dawn, we'd spoken with two families. One was a couple from Nebraska, whose fifteen-year-old girl Carrie had been operated on three days before. It was her second open heart surgery in seven months. They'd been living in Miami, and Carrie had had some extensive reconstruction of her aorta. That had seemed to go well, and a few months after she'd recovered, they moved to Nebraska. Then suddenly she'd suffered heart failure, and came close to dying. This was because some supposedly new and improved heart-tissue patch material had proved eminently useless, and had begun to come apart. After she'd achieved some degree of stability in Omaha, she was flown on a medevac jet back to Miami and they'd operated again. According to her parents, the surgery had gone well. The only thing was, she wasn't waking up, even three days after the operation. She wasn't in a coma, but she wasn't regaining consciousness, and was still on the respirator. She would open her eyes a couple times during the day, and seem to recognize Mom or Dad and glance around and maybe understand where she was. But she just wasn't coming out of a post-operative sleep and breathing well on her own.
The other parents were from Missouri. Their little girl was named Kinley. She was born with a syndrome called Marfan, which includes heart defects, abnormally elongated hands, and, in Kinley's case, extreme thinness. She was two-and-a-half, and had had successful heart surgery in St. Louis a year earlier. She had been doing quite well over the winter there in Missouri, walking and talking. A bright little girl, with blue eyes and dark blond curls.
Her mother was young, I'd say early twenties, and seven months pregnant. Kinley's Dad was the crew chief for the mother's brother, who is a stock-car racer. The extended family, including Kinley's affable grandfather and grandmother, had combined a race the brother had in central Florida with a vacation, and had come down in a caravan of a large mobile home and a couple of pickups and the trailer with the race car on it. They were up around Lake Okeechobee when Kinley got very, very sick. From the first small-town hospital where she was taken, they'd rushed her to Palm Beach. She nearly died there. She'd picked up a viral infection that had taken firm hold in her repaired heart. It was touch-and-go for two weeks in Intensive Care, but they finally got her stabilized enough to fly in a helicopter down to Miami Children's for surgery. That had taken place two weeks before Joe's ordeal.
She was getting better, though. The hospital had roped off a section of the rear parking areas and the grandparents had parked their mobile home there. They were well into their fifth week away from home. But Kinley was a little better each day. We saw her a few times a day, usually being strolled around by her pretty and friendly big-bellied Mom, or carried through the halls by her stocky, strong, scrub-faced Dad, who wasn't a teenager but looked like one. She couldn't walk -- her legs were too insubstantial to hold her up. But one afternoon, supported by her father, she was taking a few halting steps.
Nico and I would greet Kinley and she would acknowledge us with the faintest smile. Her grandfather told us that she hadn't said a word since coming off the respirator a week earlier. She'd been on for four weeks, and the doctors said her throat was probably sore. But her mother also told us that she'd been examined by a child psychologist, who'd diagnosed deep depression.
"I guess even babies can get depressed," her mother said. "Lord knows she has reason. They say she'll come out of it, though."
Near noon, a little over four hours since Joe had been taken to the operating room, Nurse Jane came up and found Nicki and I walking in the hall.
"They're finishing up, and Dr. Burke asked me to come out and tell you that everything went very well," she said. "He'll be here to talk to you himself in fifteen or twenty minutes."
A sort of elation rose through my body. It welled up from my feet.
Nicoletta and I hugged. She was obviously happy too, but less inclined than myself to take this as the point at which nothing else could go wrong.
Ten minutes later Dr. Redmond Burke found us. He was smiling.
"It went very well. We cleaned out all the obstruction and closed the VSD and his heart is now in great shape," he said.
He had a contact sheet of color photographs and we stepped into the waiting room where we could sit down and he showed us the closeup documentation of the operation, pointing from picture to picture explaining what was what; the exposed heart itself, like a smallish wet red mango, before being incised. Then the view into the ventricle as he opened the incision with a two-pronged thingy. There was a lot of white tissue, with just a slot through it.
"That white is all scar tissue, and it was more than I'd expected to see, from the echo. You did the right thing in deciding to do it sooner rather than later, because this was a great deal of obstruction."
The horizontal plane of scar tissue had divided the ventricle nearly in two, drastically obstructing blood flow. What Burke found was that, more than a case of right ventricular outflow tract obstruction -- Joe really had a double-chambered right ventricle. But it was now a cleaned-out well-pumping single chamber, with no jet of blood shooting through the septum from the other side. He'd put a kind of purse suture around the tiny hole, and pulled it closed.
"I'm very pleased," the doctor said. "They'll be bringing him out in a few minutes and he's already off the respirator, breathing on his own. Which is rare, to come out of the OR already off. He's a strong boy."
Now I allowed myself to be completely overtaken by joy. Nicoletta, too. We thanked the doctor, who said he'd be seeing us periodically.
About ten minutes after Burke left us, Nicki was sitting in one of the chairs and I was standing in the doorway of the waiting room. Up the hall a bed on wheels turned the corner and as they came toward me, I realized it was Joe: "Nicki, Nicki, here he comes!" They stopped him right in front of us, and he was still out cold, and very pale. He had the sheet pulled right up to his chin. The woman who was going to be his nurse in Intensive Care, Deborah, said they were going to get him set up in his room, get the monitors and IV stuff all attached and hooked up. She asked for five minutes.
I was giddy almost. Nico looked a little shaken by the sight of him, so still and white. We held hands and walked the hall a couple of times before Jane came and told us to go to the ICU.
Now the sheet was down, so you could see a lot more. He was very connected to all sorts of stuff. The incision was visible under nearly transparent steri-strips. At its lower end, a tube emerged, one to drain the chest cavity of fluid. Joe was unconscious, and cadaverous-looking, his lips blanched. A yellow tube, called a central line, which goes into the carotid artery and runs down to the heart and is used to administer medicine, was stitched into his neck. He had an IV tube in his right hand, a red E.T.-kind of light over his left index fingertip, a diaper on and another tube, which was around his penis, coming out of that. There were also several electrodes stuck on his chest and extremities.
Nicoletta broke down in sobs.
It's true, Joe looked bad there. But I remained elated. He looked like I'd imagined, but his chest was rising and falling, so everything seemed great to me. He was hooked up and super-monitored, in the best hands, and everything was downhill from here on. I hugged Nico and said, "Amor, he's doing great, he's great."
"I know," she said, between sobs. "It's just seeing him like that."
Debbie, a young South African woman who is very kind, asked Nicki if she was OK and put a gentle hand on her shoulder.
From there, it turned out, it wassmooth sailing.
Joe was on antibiotics and a solution to keep him hydrated, and morphine for the pain he was going to feel once he woke up. Nico and I both pulled up chairs to his bedside and watched him sleep. We soaked in our sense of relief. He began stirring about a half-hour later, and over the next 45 minutes, came out of his deep sleep. His first sounds were whimpers, and weak calls for Mamma. She stroked him and told him she was there.
When he'd come around a little more, he started rolling from side to side on the bed. I mean, rolling from his back onto his right side, then rolling over to his left side, across the bed, then trying to sit up, opening his eyes and starting to complain, though still more with sounds than with words. And I thought, What the hell is this? An hour ago this kid's chest was pried wide open, and now he's rolling around?
"Debbie," I asked, alarmed. "Can he roll around like that?"
"Oh, yes. He can't hurt himself. Everything is all held together tightly," she said, and I remembered Burke had told us they'd put six steel rings around the sternum to hold the two sides together. Rings that will remain there throughout his life.
That afternoon, Joe struggled out of the dark hole he'd been in. The first coherent thing he said, in a voice that sounded just like his old one, was: "I'm really, really thirsty."
And that made us laugh, like most everything he would say over the course of the next hour.
Debbie gave him a paper cup of water, which Joe, half sitting now and almost completely aware of his surroundings, gulped down. About a minute later he threw it up. He threw up at least three times that afternoon, after drinking water or eating Popsicles.
He was enjoying the Popsicles, though. In the course of about an hour and a half, he ate first a red one, then a green one. It must have been around 3:00 p.m., and I'd raised the head of his bed some and he was half-sitting, seemingly quite comfortable despite the tubes and wires. I think it was the morphine. He was explaining to me that the next Popsicle, he wanted it to be blue. Then he stopped and looked at me, with his normal expression, and asked, "Dad, you know what I just realized?"
"That I'm not talking as good as I used to."
I laughed, and he smiled.
Like the operation itself, the recovery went extremely well. Joe spent Wednesday and Thursday nights in Intensive Care, and Nicoletta and I slept in the waiting room; whenever Joe woke up, the nurse would come get one of us. There were some ugly moments. Taking out the central line was bad, with Joe yelling and kicking, held down by three adults. But even that feistiness was seen by the doctors as a good sign.
On the second day, still in ICU, he said he wanted to do caca. So I got him down off the bed -- he was unattached to the tubes and monitors by now, though he still had the IV input taped to his hand and flopping around -- and took him over to the swing-out toilet.
He hadn't defecated since Tuesday, and had been on morphine, which tends to constipate. So I'd figured this was not going to be easy. Sure enough, when he pushed even slightly, he winced.
"It hurts," he whined.
"Sure it does, amorcito. You haven't done caca in three days and some of the medicines they gave you make it hard. Probably gonna hurt coming out."
"No, Dad," he insisted, half crying. "When I push, it hurts my scratch."
That's what he called the five-inch-long breastbone-splitting slash down his chest: his "scratch."
Later that afternoon he was transferred across the hall, out of ICU. He walked with me, holding my hand and complaining of dizziness. But the doctors and nurses had told us he should try to walk around some now, and we encouraged him. By that evening, he was walking up and down the hall, glad to be out of bed. The next morning the doctors checked him out. His chest had drained well and he was doing great. They did another echo, and a chest X-ray, and sent us home.
It's been months now. Joe is fine, back into the swing of his normal activities. The steri-strips have all fallen off and the incision is healing up nicely, a line down his chest that's still violet, but not too broad. He's been swimming in the ocean and has spent a day at the Venetian Pool, swimming and going to the bottom to retrieve tossed coins. The only things still prohibited, for another two weeks, since it takes six weeks for the sternum to knit, are tree-climbing and bike-riding, to avoid the possibility of a hard blow to the chest.
Nicoletta and I continue to float on a subtle high. I guess it's the lingering enormous relief. After coming through something like this, little things bother you less. I'm going to try to make that last.
For now, Joe is unselfconscious about his scar, which the literature from Miami Children's suggests parents tell their child is his or her "badge of courage." But who knows, when he's thirteen or so? Maybe he won't like it. And maybe there's something particular about the subconscious of a kid whose heart was stopped for nearly two hours, who didn't breathe for that long a time. Does your brain even know?
There's a saying in Spanish: "Lo que no te mata, te hace mas fuerte." "That which doesn't kill you, makes you stronger." I have an intuition that that will apply here.
For myself, and Nicoletta, what we take away from this whole deal has something to do with another saying in Spanish: "Miseria de otros, consuelo de tontos." "The misfortune of others is the consolation of fools."
I guess even the most wretched can find someone more miserable than themselves. In some sense, taking any sort of relief or consolation from that fact might be foolish. But when you bring it down to everyday life in the real world, it can be enlightening to raise your level of awareness of the many people dealing with problems and miseries so much more difficult than your own. The people I think about most when I ponder this experience are the mothers and their disfigured girls in the surgery waiting room, and Carrie from Nebraska and her parents, and Kinley from Missouri and her big family -- how they all were struggling so admirably and keeping their hopes up and maintaining their kindness and compassion, too.
I think of them when I think of how lucky we were with Joe, which is pretty often. I got in touch with Redmond Burke, Joe's surgeon, recently, to ask about Carrie and Kinley. He told me that in the weeks after we left the cardiac ward, "the girls did well," too.
This Christmas week, they're happily at home with their families.