Red Sox Karma – 2nd Time – Part Nine

As guests of the Red Sox, Dr. G., Andrew and the traveling party all went to Larry Lucchino’s house to relax before they were scheduled to return to Fenway for the 7:20 game.  The two of them, surgeon and patient, walked around the house, exploring.  And eventually they reached Lucchino’s office, where a large, gold trophy sat on a credenza behind the desk.  Dozens of flagpoles sprouted up from the base of the trophy, and when the two Red Sox fans got close enough to it, they saw it was the trophy from the 2004 World Series.  Consider the odds.  In 1994, Kris Guleserian was a surgical intern at Brown University Medical Center in Rhode Island, Andrew was born in Midland, Texas, and the Red Sox finished 4th in their division, winning only 54 of 162 games.  Ten years later, the Red Sox won their first World Series in 86 years.  Three years after that, this strange confluence of events and lives got to Fenway Park for another Red Sox World Series.  After an all too brief rest, the traveling party returned to Fenway and another round of press interviews.  The PR staff of the Red Sox instructed Andrew as to what would happen when they brought him out to toss the first pitch, where he’d stand, who would be catching.  And Kris was content to stand on the sideline and watch.

“I told him, ‘Andrew, you’re going to be awesome.  You’ll be great on the mound.  I’ll be right over here watching.’  And the Red Sox people are saying, ‘No, Dr. G., you’re going out there with him.’  So now, James Taylor is singing the National Anthem to a full house and it’s dead quiet until he finishes.  And they begin to introduce Andrew and tell his story, and then the PA guy is saying, ‘And his surgeon, Dr. Kristine Guleserian, is from Boston, and attended Harvard, and Brown Medical School…’ and guys near me in the stands are yelling out ‘Hey, will you marry me?’ and I’m like, ‘Get those guy’s names!’

“And just before we walk out on the field Andrew asks me if he has to wear his surgical mask, and I said, no, not for this moment.  I’d faxed all his records to Boston Children’s just in case something went wrong.  He was supposed to wear a mask to keep germs out, and I’m thinking, ‘He’s gonna get sick, I’m gonna get fired.’  And then, when you do a sternotomy, when you cut somebody’s chest open and then you wire it back together, you tell them, basically, ‘NoNothing for six to eight weeks.’  And here, this kid is barely three weeks out of transplantation, and he’s going to throw a baseball before a stadium full of people and national TV.World Series: Colorado Rockies v Boston Red Sox - Game 2

“And then, the stadium got completely quiet as he threw the pitch.  And when the catcher caught it, everybody just went crazy.  It was wonderful.  So now we’re walking up through the stands to Mr. Lucchino’s box, and all these big, tattooed Boston fans are high-fiving Andrew, ‘Way to go, Dude!  You rock!’”

Finally, in the Red Sox suite, a chance to sit back and watch some baseball, in between meeting movie stars and politicians who popped in and wanted to see the young pitcher and his surgeon.  Curt Schilling pitched a gem for Boston and the Red Sox won 2-1.  After the game, like any good fan, Andrew wanted to head for the souvenir shop.  It was then that Kris confessed her gambling secret to him.

“I told him what I’d done in Vegas, how I bet on his number, and I handed him the money and told him to get anything he wanted.  But I realized at that point, it’s now midnight, and between meeting people in the suite all night and chatting with everybody, I hadn’t had anything to eat, and I was starving.  But then, one of the Red Sox VPs comes over and asks if Andrew would like to meet some of the players, and the one he really wants to meet is Josh Beckett, the pitcher, that’s his hero.  The guy takes us down to the clubhouse and we meet everybody, we get pictures with every player.  And all these major league players are coming up to Andrew and high-fiving and telling him how great he did.  And they meant it.  They were really, genuinely happy for him.  And then, we figure most of the players are on the bus and I haven’t met Mike Lowell, who is my favorite, and we’re just about to go and out of the locker room walks Mike Lowell, freshly showered, smokin’ hot, right?  And we get a photo of the three of us.  And then they have to go.

“Two days later, we’re back in Dallas and we’re doing a live morning show out of New York, and Andrew gives me a picture his family took of him, and me and Mike Lowell.  But Andrew tells me, ‘I cropped myself out, so it’s just you and Mike now.’”

 

Red Sox Karma – 2nd Time – Part Eight

People all over north Texas began to contact Children’s Medical Center and Dr. G in order to donate money to help make the trip happen.  But eventually, it was a page from the Red Sox president, Lucchino, which set the wheels in motion big time.  The Texas Rangers baseball club got involved by donating $15,000 for fuel for a medical jet to take everybody from Dallas to Boston. Life Flight, Inc. donated a medical jet, fully outfitted with whatever might be needed in case of an emergency, and four pilots.  Press conferences became an almost daily occurrence as the date of the trip approached.  As Kris, Andrew and his mother, and several others boarded the plane, the Rangers gave Andrew a bag full of team items.  Everybody settled in for the flight to Logan Airport.

Dr. G checks the patient and does the pre-op checklist

Dr. G checks the patient and does the pre-op checklist

“When we got to Logan, it was the same thing all over again,” said Kris of her return home.  “A huge press conference at the airport.  Then, we have our own private Red Sox limo to take us around town.  Really it was more like a gigantic bus.  And the first place we went was to Fenway Park.  Andrew walked in just amazed, seeing the Green Monster, the big left field wall, and the diamond, and everything.  And while we were sitting in the dugout, the Red Sox mascot, who’s also called the Green Monster, came over and began messing with him and they were having a lot of fun.  The phone in the dugout that goes to the press box started ringing, and the Monster kept indicating to Andrew that he should answer it.  Finally, he did.  He sat there for a moment, and his eyes just got huge.  And then he said, ‘They want me to throw out the first pitch tonight!’  And I’m thinking, this day just keeps getting better and better!  Then they moved Andrew out on to the field and reporters from all over came up and were asking him questions about how it felt to be there and what his heart transplant went like.  And I was looking at all these Boston sportscasters I grew up watching, and I’m in serious ‘Little Girl’ mode.”

 

Red Sox Karma – 2nd Time – Part Seven

And yet, in the way that fate works, events concatenate in the strangest of ways.  Two medical conferences, one in Las Vegas, and one on a cruise ship, came up during Andrew’s recuperation.  In Vegas, where her father and brother joined up with her, Kris decided she wanted to take a flyer at roulette.  So she got to the table and after some false starts on the digital roulette betting screen, she finally got down a $15 bet on number 9.  Ted Williams number with the Red Sox.  Andrew’s number on his Little League team.  Number 9 hit and she got paid off at 33:1.  She wanted to rush to a phone and call Andrew and tell him, but her brother told her it might not be a good idea to tell a 13-year old that you In the ORwon money gambling on him.  So, Kris put the money aside.  Then, at the conference on the cruise ship, she became doubly distraught when the TVs in the ship’s sports bar were all tuned to college football games and she couldn’t track the Red Sox progress in their American League Championship Series against Cleveland.  The Sox were down 3-1 in the best-of-seven series to determine which team would advance to the World Series when Kris met up with her cruise ship.  Overcoming that deficit was next to impossible.  But they won game five in Cleveland.  Then, somebody on board ship mistakenly informed her that the Sox had lost game six, which meant the series was over.  She began her talk to the medical group by asking for a moment of silence for the Red Sox.  She was so overwhelmed by news of her teams defeat that while all her medical friends went to party, she went by herself out to a chair on deck to read.

“As I sat there, feeling like the biggest loser on the boat, one of the guys from our group came by and he had a Reuters feed on his pager and it said Boston had won game six!  We were still alive!   So now, I get back home and I invite Andrew and his mom to come over and watch game 7.  It was a close game, and they had to leave in the 7th inning.  But the Red Sox had already broken it open and won, and now they’re in the World Series.”

By this point, the story of Andrew, his love of the Red Sox, his heart transplant, and his Boston-bred surgeon had begun to make the rounds, first on local TV in Dallas and, before long, in cities like… Boston.  And Kris’ Red Sox luck continued.  It turned out that the president of the Red Sox, Larry Lucchino, is married to a woman from Dallas who still has family there, including her sister, Stephanie Wilkinson.  Stephanie is up on the story, and is calling her sister in Boston to tell her all about it.  And somewhere along the way, as these stories have a habit of doing, it took on not only a life of its own, but a false identity.  It seems that in the telling and retelling, it became gospel that Kris had promised Andrew tickets to the World Series if the Red Sox made it.  But there were dozens of obstacles in the way; everything from, would the Red Sox go along with this whole thing to, was it safe to have a kid 21 days out from a heart transplant fly halfway across the country and spend a chill autumn night outdoors at a baseball game.

 

Red Sox Karma – 2nd Time – Part Six

Amid this on-going, real-life drama, and with a schedule already crammed full of surgeries and consults and teaching and conferences, Dr. Guleserian decided to take on a rare social engagement.

Dr. Guleserian, the head in the middle, operating on a young child's aorta.

Dr. Guleserian, the head in the middle, operating on a young child’s aorta.

“Two of the cardiologists at the hospital were pregnant, so I offered to throw a double baby shower for them at my house.  And of course the only way I would do it was to do it all myself.  I’ll make the tea sandwiches and cut the crusts off.  I’ll have the salmon, the capers, the eggs, everything.  Invitations were out.  People were to begin arriving Sunday at noon.  Sunday morning, 4am, I get a call saying, ‘We’ve got a heart for Andrew.’  It was a 23-year old woman who had just given birth and died postpartum.  Young, healthy woman.  Small, perfect size, blood type was right and… it was just next-door at Parkland Hospital.  No need to get on a plane and go on an organ harvest three hours away.

“So, at four in the morning, I start making the food for the shower.  I labeled everything for my friends who don’t really cook or do the gourmet thing, because I am kind of a stickler for perfection.  I had sticky notes everywhere about what to put where. ‘Don’t forget this.’  ‘Do that.’  So I set it all up, and then went into the hospital to do the transplant.  And later in the morning I called one of my friends and told her I couldn’t be there for the shower, but here’s where I hid my house key and all that so she could go in and kind of run everything.  Have a great time.  And as a joke, when they knew I was in surgery, they called to ask me where my fire extinguisher was.”

Because this surgery was to have some significance as the 100th heart transplant at Children’s Medical Center, Kris decided to invite back the surgeon who began the transplant program, Dr. Steve Ring.  Dr. Ring performed the first heart transplant at Children’s in 1988 as head of the cardiothoracic surgery department, and he was flattered to be asked to assist Kris, his former underling, in the surgical procedure.  The surgery was fairly routine for what is listed on the official surgical report as an “Orthotopic Cardiac Transplantation.”    Once the surgical team got word from Parkland Hospital, just next door, that the donor heart had been harvested and was en route, Andrew was anesthetized.    The skin on his chest was cut open with an electronic scalpel called a “Bovie” which cauterizes as it cuts, minimizing bleeding.  Then the breastbone was cut open with a small surgical saw, and the chest drawn back with a retractor.  Lines were placed in Andrew’s pulmonary artery and aorta to lead his blood into the heart-lung machine for oxygenation, and then back into his body.  His body temperature was lowered to induce a state of hypothermia, which would offer the surgeons more time to keep him “on pump,” as a cooled brain dramatically slows down body function and, thus, reduces the amount of oxygen needed.  Once fully on the machine, the team cut Andrew’s heart out of his body, and it was placed aside in a small dish for later examination by pathologists.

Because the donor was slightly larger than Andrew, the parts of her heart which would tie into his had to be trimmed back a little bit to ensure a perfect fit.  Once the new heart was in place, Andrew’s body was re-warmed.  When he was weaned from the heart-lung machine and blood circulation resumed, her heart began to beat in his body. All in all, it was as normal as a heart transplant can be.  Dr. G. and Dr. Ring both stood on small stools near the operating table, making it easier on their legs.  They were on the stools for approximately ten hours, without any break of any kind.  No water, no restroom.  Nothing.

Andrew’s surgery had been something of a day in the park for Kris, when compared to the transplant she had performed just a couple of weeks before.

“The little guy I had transplanted just before Andrew  was our youngest, smallest transplant ever.  Five pounds in weight, one week old.  While he was getting better, Andrew was waiting for a heart to become available and I started joking with him.  ‘You know, if you get better soon, we could head to Boston and see a game at Fenway because my family has had season tickets for years.  Maybe we could even make it to the World Series.’  Now, this was August.  I had no idea who’d be in the Series.”

 

Red Sox Karma – 2nd Time Around – cont.

“Since Andrew had been diagnosed at birth,” said Dr. G, “he had been kind of used to being around doctors and hospitals all his life, so even though he was sort of scared and nervous, he was still very cooperative, he was a full team player.  He was anxious, of course, but he was very easy to talk with.  Sometimes, we get kids in who are so sick that they have an arrest, and the next thing they know, they wake up with a new heart.  They don’t really participate in the procedure because they are so sick.

“So now, every time I go to see him on rounds, before we talk about anything medical or how he’s feeling, we have to talk about the Red Sox game from the night before.  But one Saturday, I’m rounding and I walk in on him and he’s on his laptop, so I ask him what he’s doing and he tells me he’s ordering a new Red Sox cap, cause he left all of his at home in Odessa.  I hinted to him not to bother, because I might have something for him.  My parents had just sent me a box full of Red Sox gear, including the traditional blue cap with the red “B” on it.  The day after I saw him on his laptop, I gave him a little gift box with the cap in it and I put a note in that said, ‘The Best Is Yet To Come.’  And as soon as he saw what it was, he asked if he could wear it during his surgery.”

It was at this point that Red Sox karma began to kick in.  Dr. G. had been discussing the Red Sox with Andrew, and their lengthy history of despair; the trading of Babe Ruth; the decades without a World Series win; the perseverance of Red Sox fans through the toughest of times.  Then she told him not only could he wear his cap, but that she had a surgical cap that had the Red Sox logo on it, and she would wear that in the O.R. as well.  The upbeat optimism of the shared love of baseball provided a needed buffer for what is often the most difficult emotional part of the transplant procedure – the wait for a donor heart and the attendant philosophical drama.  There is an almost ghoulish aspect to this wait.  As in baseball, somebody must lose so that somebody else might win, in this situation, somebody else must die for this patient to live.  And not just die, but die in a prescribed manner, where certain things have, or have not, occurred.

Dr. G explained.  “The number one criterion for the donor is heart function.  I’ve seen echo reports where the cardiologist wrote on the echo screen, ‘THIS HEART IS NOT SUITABLE FOR TRANSPLANTATION,’ but they put it on the list anyway.  Pediatric donors usually have young, healthy hearts.  But if there was prolonged resuscitation involved, if there was extreme trauma, if the donor dies because of some infection like meningitis, then that heart is not suitable.  Other situations such as drowning, where the right heart has been subjected to high pressures for a long time.  There have been reports of HIV and other things transferred to patients via transplantation.  I won’t accept one of those high-risk hearts to put in a young person.”

Dr. G at a Red Sox game in her home town of Boston.

Dr. G at a Red Sox game in her home town of Boston.

Red Sox Karma – Second Time Around – Part Two

Dr. Kristine Guleserian in her fiberoptic headwear during a heart transplant.

Dr. Kristine Guleserian in her fiberoptic headwear and Red Sox surgical cap during a heart transplant.

The first meeting between surgeon and patient is always important, especially in the pediatric setting.  The surgeon has to establish a friendship and trust almost immediately, and when the surgery involved is something as drastic as a heart transplant, the surgeon has to be able to count on the patient as another member of the surgical team.  Dr. G. solicited some information from the people on the cardiology service about Andrew; what kind of a kid he was, any information about him they might have, likes, dislikes, hobbies, etc.

“All they told me was, ‘There’s a kid named Andrew, and he’s a skinny, white kid.  He has not gained a single pound in the last year,’ which is very unusual for an adolescent and so you knew something was wrong, and they said, ‘Oh and he likes baseball.’ I said, ‘Great.’”

Armed with that small amount of personal information, the details she scanned on the monitor in the Echo Lab, plus the data from Andrew’s medical chart, Dr. G. went to the eighth floor in-patient section for the first encounter.  What she found when she first set eyes on Andrew would depress most people not used to seeing, or not caring to see at all, a critically ill child.  The sterile, bland, green light in the room made everybody look pale.  The insistent beeping and low-throated hum of the machines needed to monitor Andrew and keep him alive did not even register on her ears, as common to her as the summertime chirping of crickets.  The chirping in Andrew’s room, however, denoted each beat of a damaged and diseased heart, and displayed in bright green numbers on a “vitals” monitor along with blood pressure, oxygen saturation and more.  Kris took in all the numbers at a glance.  Andrew was not that different from a hundred other cases.  Until they began talking.

“There’s this skinny, little kid with an iPod on, wearing a red t-shirt that said, ‘Tornadoes,’ which was the name of his Little League team.  So, I introduced myself and told him that I heard he liked baseball.  And he said he did, and I told him, ‘Well I’m from Boston and I’m a huge Red Sox fan.’ And he just looked at me, pale as a ghost, skinny as he can be but his eyes just lit up and he said, ‘The Red Sox are my favorite team!’  When I asked him why he said, ‘Well because they’re sort of like the underdog team a lot of the time and I just love that.  And the 2004 World Series was such a great comeback.’”

The connection had been made, going a long way beyond beeping monitors and blood pressure, and in the pale green hospital light, a partnership began to take shape.

Preparation began for Andrew’s transplant, which included listing him on the United Network for Organ Sharing (UNOS).  And this would be a significant transplant for Children’s, the 100th since they began performing the surgery in 1988.

 

Fenway Park – Second Time – Part II

For those who missed it a year ago…  FENWAY PARK & CARDIAC KARMA – PART II

Andrew was taken by air-ambulance to Dallas, and admitted to Children’s the next day. He and his mother had 13 years to understand his life, and his heart, and the difficult and unforgiving path which life had laid out for him to get him to this point. Dr. G. had less than a day to take it all in, analyze the salient points, and make decisions which could, in the very real sense of both words, involve life and death. She’s the coordinator of the heart transplant program at Children’s, and she became involved in Andrew’s case because transplant was one of the first, and most likely, options for a kid in his situation. Her decision making process began in the Echo lab. After seeing the extent of the problem on the computer screen, she went to meet Andrew, who was already being treated with intravenous medication to slow both his heart rate and function in an effort to keep him stable. At this point, the choices for Andrew were slim. As the I.V. medication was not giving him a significant lift, the only remaining options were the implantation of a machine to aid his heart function, called a Left Ventricular Assist Device (LVAD), or a heart transplant. The LVAD option is not a pleasant one. It involves combining the left ventricle with a large, complex external device to improve ventricular function. A vigorous teen-ager like Andrew would not have enjoyed life on a pump. The transplant option is a difficult one, as well. A heart transplant is not the panacea many people think it to be. For the rest of the patient’s life daily medication is required, to make certain the body does not reject the new heart as a foreign organ. But there is more to it than just lifelong medication. The process of cutting open the chest, through the muscle wall, through the breastbone, placing the patient on the heart-lung bypass machine to sustain life while the heart is removed and replaced, is a crushing physical challenge for any person to undergo. There are psychological scars involved for transplant patients which are just as real, and often more prominent, than the physical scars. Whether it is the length of time the patient is on anesthesia, or simply the emotional baggage involved in major surgery, not everybody bounces back from it into a completely normal life. Add to that the problems a young teen faces just dealing with all his raging hormones, and the picture becomes quite complex.

“The first thing we consider when we look at a kid for transplantation is that there has to be a need for it. Not everybody who comes in with heart failure gets on the list. If you have a malignancy, an active cancer, if you have a systemic disease that will affect the new heart, if you don’t have a supportive family and, unfortunately, if you don’t have certain financial viability, these are some of the first contraindications. Potential transplant candidates are worked up for cardiology, surgery, financial structure, neurology, and psychological evaluation, as well as other sub-specialties. Then we all come together as a team and make our transplant assessment. I did my surgical transplant assessment and I thought he was a great candidate because he was otherwise a healthy kid,” Dr. G. noted, “very active, came from a very supportive family. So he was worked up, and he was listed for transplantation.”

At that point, Andrew and his family were given a pager and told to always keep it close at hand. The moment a donor heart was located, everything in his life would have to stop, and no matter where he was in the hospital or what he was doing, he would begin the final prep for surgery to replace his heart with that of someone else. Someone who had not died yet.

Dr. G at a Red Sox game in her home town of Boston.

Dr. G at a Red Sox game in her home town of Boston.

Fenway Park – Second Time

For those of you who missed in the first time around, which was quite a while ago, here is one of the more fascinating out-of-the-OR stories from Dr. Guleserian’s career.  This is part one.  It will continue in subsequent posts.  Please feel free to share it in any way you like.

Dr. G at a Red Sox game in her home town of Boston.

Dr. G at a Red Sox game in her home town of Boston.

FENWAY PARK AND CARDIAC KARMA

by Mark Oristano

The cool night air was to be expected in October’s New England, and where there were trees to be seen, the leaves had already assumed their annual, golden hue. But inside Fenway Park in Boston green remained the dominant color, the brilliant Irish tint of the grass set against the faded green of the towering left field wall, the famous Green Monster. The chill at Fenway was of no concern to Andrew Madden as he held the baseball loosely in his right hand and kicked at the rubber on the pitcher’s mound, nor was he disturbed by the roar of 36,370 fans in the stands, ready for game two of the 2007 World Series between their Red Sox and the Colorado Rockies. Andrew might have wondered if he was trying to pitch again too soon. He wasn’t recuperating from a sore muscle, or even a torn rotator cuff. No player in baseball history had ever come back from the surgery Andrew Madden had recently undergone and taken to the mound again. The crowd went silent. Pumped by the sport-specific adrenaline that only his first World Series game could provide, Andrew wound up and let loose with a screwball, designed to break in toward a right-hand hitter. But no there was no one in the batter’s box. Andrew’s pitch bounced harmlessly in the dirt in front of the catcher, who scooped it into his mitt with a practiced ease, trotted out toward the smiling pitcher, and handed him the ball. The 36,370 broke into a full-throated roar. Andrew had never heard such a sound before, had never imagined hearing it; not on this field; not in this way.

Only 21 days earlier, 13-year old Andrew Madden lay unconscious on the table in OR 5 at Children’s Medical Center of Dallas, draped in sterile blue cloths, his chest cut open and his blood circulating from his body through a heart-lung bypass machine which oxygenated the blood to feed tissues and organs while his own heart was being cut out. The young heart, critically weakened by Idiopathic Dilated Cardiomyopathy, was replaced with the healthy heart of a recently deceased 26-year old mother. Because she was young and slender, and because she had the same blood type, her heart was perfect for Andrew. She had died in childbirth earlier that day. Now, even while her family grieved, she was giving birth again.

It was the beginning of Andrew’s comeback, the completion of a heart journey which had taken him from Dallas to Boston. The surgeon performing the operation, Dr. Kristine Guleserian, was Andrew’s friend and fellow Red Sox fanatic. Dr. G took the journey in reverse, from Boston to Dallas, where her path intersected with Andrew’s in August of 2007.

The first day I shadowed Dr. Kristine Guleserian around Children’s Medical Center of Dallas was both an education, and a physical challenge. Even though I’m 13 inches taller than she, Dr. G. walks faster than I can keep up with when she’s at full speed. She is generally at full speed. She burst out of her office at the moment our two o’clock appointment was to begin, throwing on her long, white lab coat as she hurried toward the door.

“Come on, let’s go. You wanted to see my life? This is it.”

I ran after her on her way to the Echocardiography Lab as she went to examine a high-end ultrasound view of one of the hearts on which she would soon operate. She is one of only nine women in the country practicing congenital cardiothoracic surgery, operating on the tiny hearts of newborns only days old, as well as the more mature hearts of youngsters and teens. Her first view of a case often comes in the cramped confines of the Echo Lab, a dark room lit mostly by the glow of the computer monitors on every desk and wall. Two cardiologists, also women, sat at one end of the room staring at a monitor, and Dr. G sat with them. An Echo is black-and-white, and to the layman, it looks likes nothing so much as a pie-shaped, blurry, moving x-ray. To the six trained eyes around me, however, it was an intimate, personal portrait defining a cardiac road map. A nine-year old boy had a problem with his left ventricle, the chamber of the heart that pumps oxygenated blood to the aorta for its trip through the body, and the cardiologists wanted Dr. G’s opinion as to possible surgical intervention. She was Socratic, as I would later observe her to be when teaching residents on rounds, asking questions she likely already knew the answers to; never instructing, merely stating, “Well, I might do…” so-and-so.

Along with the fuzzy black-and-white image, an Echo also has audio, the swooshing sound of the blood as it moves through the four chambers of the heart. It’s the sound a doctor hears with a stethoscope, amplified in this room through speakers, a throbbing, rhythmic drumbeat which would be the envy of any percussionist, and after a short time, in a small, hot room, it becomes hypnotic. As this was my first exposure to the complex jargon of cardiac anatomy being used in its element, I found myself numbly trying to comprehend the words, and then falling victim to the relaxing, repetitive rhythm of the heart valves and the coursing blood. This was a heart in distress, but the sounds it made were incredibly soothing. The snap back to reality came when I caught my eyes closing and I sat up, reminding myself that this was not a TV show. These people were discussing cutting open the chest of a young child, so they could carve into his heart. In 15 minutes the case had been discussed and a course of action decided upon. It’s in this same room where Kris first met Andrew Madden. Many doctors will refer to a patient as simply that, “the Patient.” But Dr. G. will use terms such as “this little guy,” or “this doll,” and, most often, the child’s actual name. There are parts of America’s complicated, convoluted, and contradictory health care system that work — those parts guided by people who care about their patients as human beings and not as, “the appendectomy in 240.” The first time Dr. G. glanced at Andrew Madden’s echo she saw amid the fuzzy black-and-white blob what the layman might call an enlarged heart. To Dr. G., it was clearly Idiopathic Dilated Cardiomyopathy.

“Dilated cardiomyopathy is a process by which the heart muscle, over time, dilates, or gets larger,” Dr. G. explained during a rare break in a crowded day. “The first word of the diagnosis is ‘Idiopathic,’ meaning we don’t know why it happens. When you’re born with it, as Andrew was, some people get better. But, some people get worse and some people sort of stay the same over time. About a third, a third and a third.”

The primary danger with cardiomyopathy is that the heart function becomes less efficient as the heart grows in size. Eventually, the pumping action becomes so weak that the patient is in danger of total heart failure. Not long after he was born, it was obvious Andrew was not getting enough oxygen to his body, and his heart function was inefficient, but the problem was mild enough that, with medication, he could live a normal, healthy life, which he did for thirteen years. Growing up in Odessa, in west Texas, where a good part of life is as it used to be decades ago, with kids playing baseball all day, and making sure to add “Sir” and “Ma’am” to the end of a sentence when speaking to a grownup, Andrew was as normal a kid as he could be. Little League baseball, basketball, school. It was on the local par-3 golf course where Andrew’s life all but hooked into the woods for good.

“It was mid-August,” his mother, Laurie Wemmer, recalled, “and he was trying out a new set of golf clubs. I was with him. All of a sudden, he fell to his knees and began gasping for air. He was showing all the signs of heart failure. He had reached the point where his heart was barely pumping.”

OR Tackle Box

OR Tackle BoxNo, nobody’s going fishing after surgery.  Yes, that is a tackle box.  It’s on the anesthesiologist table in the OR and it has all kinds of things in it that they use to put the patient to sleep, and make sure that sleep stays at the proper level.  (It’s not so odd to see a tackle box used for something other than fishing.  Many of my fellow stage actors use them for makeup cases.)