Kids are tough!

Kids are tough. They just take whatever life hands out and keep on keepin’ on. When I was at the University of Alabama at Birmingham (UAB) in 1977 for my second heart surgery, I met not one, but two perfect examples.

UAB had a playroom near my room, and it was the perfect destination. The “Adult” waiting room was right across the hall, so the folks would walk down there whenever the hospital room began to make them crazy. I’d go along too. I was 10/almost 11, and even though I was one of the older kids I could hang out and break up the boredom. Patients get a little bit crazy, too, you see. One of my first times down there I was trying to talk to one of the other kids – who wanted nothing to do with me – when this other little fellow ran up and asked “Mister – ”

What’s with this “Mister?“ I thought.

“Mister, can you fix this for me?” I had no idea but I took a look at the toy he offered. Turned out to be nothing; someone had put the battery in backwards but he was too young to figure that out. Thirty seconds later the toy was running and I was popular! I could fix things, and that was an important skill to have.

A couple of days later I was in the playroom and in walked a Mother we had met. Her child had an unexplained illness and no one had figured out what it was yet. Billy (I can’t remember many names from that trip to UAB, I guess too much time has gone by. So we’re going to call this young man Billy) was feeling better, would we mind if he came down to the playroom?

Certainly! Everyone needs to get away from the hospital bed every now and again, bring him on down! She left, and in a few moments she was back with Billy.

Billy was up and moving around but he was connected to an IV pole. That’s an common sight, but the needle led to a tape covered area of his head. Holy Mackerel, this kid has an IV in his skull, but it didn’t seem to bother him much. The biggest problem was when he was playing and got too far away from the IV. His line would go taut and pull him back, and Billy would have remember to pull the IV pole along with him. If that had been me, I’d have thrown screaming fits whenever someone mentioned the words “IV” and “head” in the same breath. Holy Cow, kids are tough.

Another person I met was Phil (another made-up name, I hate to say). Phil was a six-year-old with a growth on his spine and was scheduled for back surgery about the time I was having my heart surgery. By the time I saw Phil again, the playroom was off-limits (possibility of too many germs) but it was still a destination. That first week of recovery I’d walk from my new room to the playroom, turn around, and head back to my room.

I was just starting back towards my room when Phil came into my view, riding a Big Wheel. He was having fun, tried to pull a wheelie… and went over, landing flat on his back. Right on his incision!

Youch! His mom came running over, yanked him to his feet, and snatched his shirt up. I expected the worst, but his incision looked just as healthy as mine. Not only was he not hurt, but Phil wasn’t paying mom any attention. He was looking to get back on his Big Wheel and try again! Unfortunately (or thankfully!) Phil’s racing career was over, per order of his mother.

Kids are tough… it’s the adults who can’t take it!

The Reverend

We met him in 1977, while in the hospital at the University of Alabama at Birmingham (UAB). “I’m not sure we’ve met,” he said to my dad. “I’m Reverend E.W. Harris, a couple of my members are patients here. And you are….?”

“We’re the Funky Heart family, our son Steve is here for a heart operation.”

“Where are you from?”

“South Carolina.”

“I won’t hold that against you.”

And so began a friendship that would last nearly 20 years. Rev. Harris was a Methodist minister, but he took a bunch of Baptists a long way from home under his wing and became our “second pastor.” He didn’t know us, had no connection to us, and by most standards had no responsibility towards us. At least by Man’s standard. A higher power told him otherwise.

Did my parents need a car? Yes you do, no arguing. You look like you need to see something besides these hospital walls for a few hours. Borrow mine. It’s ok, I’m planning to be here most of the day. My wife will take you around the city.

His wife was his chauffeur; Reverend Harris was born with “tunnel vision” – an ailment that limited his vision to only what he could see directly in front of his eyes. Look through a couple of paper towel tubes and you will get a good idea of how he saw the world.

But he always had a smile and an encouraging word, and jokingly let us know that as far as he was concerned, the Methodists would get to Heaven a few moments before the Baptists would. “I’m hurt,” he pouted when my dad told him that my pastor from home was flying in for my surgery. “We pray to the same God. But my prayers get there a little bit faster.”

How do you figure that?

“God has a summer home in Mobile.” (Alabama city on the Gulf of Mexico, for my non – US readers.)

He was there during that first surgery and my recovery, and there again when I went to surgery in 1988. He was there when the surgeon told my parents “I will speak to you last.” Dr. Pacifico’s skills and Reverend Harris’ prayers got me out of that operating room alive.

Our friendship continued for years after that, long after my doctor moved and I found care elsewhere. UAB is a great hospital, but it is a long way from home. My favorite doctor was now in Greeneville, North Carolina, a lot closer. It continued until that day a few years ago when the call came; the call you begin to expect when friends reach a certain age but never want to answer.

And Reverend Harris had one last surprise for us – he wanted a Baptist to speak at his funeral!

“Looks like you were right, E.W.,” Dad said that day. “You made to Heaven before the Baptists did!”

How I became the Funky Heart

It’s a pretty interesting story. You see, I was born on another planet. Right before the planet self destructed, my father placed me in a spaceship and sent me towards Earth –

No, wait a minute, that’s someone else’s story. Sorry about that! This is more of a Dragnet type of story… the names have been changed to protect the innocent.

I had gone to The University of Alabama at Birmingham (UAB) Hospital to have the Fontan procedure, and it had gone wrong. Scar tissue normally forms over your heart after you have open heart surgery, and surgical teams know that and expect it. I had had two previous heart surgeries, so I am sure they felt like there was a good chance that I could have more than usual. But what they didn’t know was that there was a lot more scar tissue than normal, and that it had formed adhesions with the back of my breastbone.

So when they split my ribcage that scar tissue tore, and blood went everywhere. The surgery was canceled and I needed 20+ units of blood to survive the operation. So even though I never had the Fontan, I got all the pain associated with having heart surgery.

*Sigh* The fun was just beginning. I got better and was sent home. I was recovering but the incision wasn’t healing, and finally began to leak pus. Back to the local hospital, where I was quickly transferred to a larger hospital. There the Cardiological team studied me, and finally said “Yep! It’s infected!”

OK, doc, what do we do?

Debridement!

Wikipedia says that debridement is “the medical removal of a patients dead, damaged, or infected tissue to improve the healing potential of the remaining healthy tissue.” How that works in the real world is they sedate you, haul you down to the Operating Room, and scrape out the infected tissue. It’s not fun.

So I was debrided. They re-opened my incision, scraped the dead tissue out, packed the incision with gauze and covered me with a large bandage, sent me for a short stay in Recovery and then back to my room. And not knowing any better, I went along with this.

Important Safety Tip: For a Debridement to work, you’ve got to get all of the dead and infected tissue out. The best way to do this is to 1) Scrape like a maniac while in the Operating Room; and 2) give the patient antibiotics. The problem is, my crack team of local cardiologists didn’t think the antibiotics were necessary. So what could have taken one trip to the Operating Room turned into three.

I was not happy. They opened up my bandages and peeled back the gauze every day, and when they said “Looks like we have to debride again” I literally cried. What in the world was going on here? Why couldn’t I get any better?

And this time, there was no safety in numbers – I had a Cardiological Service, with several doctors who rotated. I saw a different doctor every day, and every one of them had a different opinion:

“I think we can get you out of here by the end of the week.”

“Two weeks, tops.”

“At least two more weeks.”

“I don’t feel comfortable making a prediction yet.”

After that third debridment we had a late night visitor. A nurse came in, made small talk with Daddy and I, and finally said, “Most of the nurses think you need to seriously think about going somewhere else.”

Now THAT is a sign – saying such a thing can get a nurse fired, so when they get to the point that they are advising the patient to grab his stuff and go, listen carefully. So Daddy called the Cardiologists at UAB the next day. They took care of all the arrangements to return and have me admitted.

The first UAB doctor I saw was not a Cardiologist, but a Plastic Surgeon. “Here’s the plan,” he said after he examined me. “We’re going to start you some antibiotics and run them around the clock. I want you to drink a serving of Ensure at each meal and before bed to promote tissue growth. And then I am going to take a long weekend.”

Huh?

“My daughter is graduating college, so I’ll be out of town. And it’ll take some time to see if the antibiotics and the Ensure are working. I’ll examine you when I return and we’ll plan what to do then.”

So the time passed, and Tuesday morning, as promised, he was back and examined me again. “It’s going to take a while to heal, but we’re on our way. I don’t see the need to do any more debridements.”

In two days I was on the way home. I spent six days in Alabama, while my “adventure” at the other hospital had cost me seven weeks. And I came out knowing that the only one looking out for me all the time was – me! So I needed to stop being passive and start taking an active part of my health care.

And that’s where the Funky Heart was born.

Everything old is new again

We had been at the University of Alabama at Birmingham (UAB) Hospital for only a few hours, just long enough to be admitted and assigned a room. A nurse and one of the Cardiac Surgical staff were asking us the “usual” admissions questions.

“Do you happen to know what operation you had at Johns Hopkins?” we were asked.

“Yes,” Daddy replied. “It was called the Glenn Shunt.” (We didn’t say the “Classic Glenn Shunt”; the Bidirectional Glenn Shunt had been invented at that time but wasn’t being used much. It wouldn’t become popular until the early 1980’s, and wouldn’t be part of the HLHS repair until the late 1980’s. I had never even heard of the Bidirectional Glenn!)

The Cardiac staffer put down his pen. “The Glenn Shunt… wow. They don’t do that very much any more.”

My eyebrows shot up. The operation that had saved my life was now in the trashbin of history.

“I guess that’s our…” he paused as he thought. “That’s probably the fourth or fifth option. They are pretty hard to take down.”

When you “take down” an operation, you basically undo it. There are times when you have to restore the heart to it’s original configuration (or as close as you can get it) before you attempt another correction. Because the Pulmonary Artery is cut, it’s pretty difficult to unhook it and reconnect it where it is supposed to be.

The true irony of this story wouldn’t be revealed until a week later, when  surgeon Dr. Albert Pacifico cut my Left Subclavian Artery and connected it to the intact branch of the Pulmonary Artery. That’s right – my second operation in 1977 was a repeat of the very first Congenital Heart Surgery:  the Blalock-Taussig Shunt, first done in 1944!

Everything old is new again!

Two Boys

I was a the University of Alabama at Birmingham (UAB) for my second heart operation in 1977. I had only been there for a day or so when two boys about my age (11) were brought into the ICU. These two young men had been riding a go-cart – one in the seat, the other sitting on the engine cover and hanging on – when they collided head on with the local mailman. The only reason they weren’t killed right then and there was that the mailman was driving a vehicle that was higher off the ground than most.

Daddy was in the elevator lobby using the pay phone when the families came boiling out of the elevator. Standing with the phone to his ear, he could see the group standing together as they waited for the doctor’s report. Although he didn’t know any of them, it wasn’t hard to identify the two mothers by the looks on their faces.

It isn’t hard to miss that look: I’ve seen Heart Moms wear it too. Their tears are gone; they have sobbed but now the shock has worn off. Now their jaw is straight and their eyes are focused. I’m OK, doc, they seem to be thinking. Now tell me what we’re up against. What do we have to do to to save my child?

One of the boys was stabilized and transferred out of Intensive Care, but he was still a mess. Lying in his bed with scars on his chest, his right arm and his left leg both still in slings. My parents and his folks became friends and we visited together a couple of times. I even took a turn sitting with him while his parents took an hour or so away one afternoon; he seemed to be a nice enough guy. My folks became friends with the other family also – a shared crisis will do that – but I never saw the other boy. Apparently he had gotten the worst of it and was in the ICU a lot longer. Both of them were still patients when I was discharged.

Both of them survived and were discharged later… two more yanked back from the brink of death. An ER doctor once told me that kids were tough, it seemed that we got wimpy as we grow older, and these two seemed to prove him right. My friend in the slings did well, but about ten years later he contracted Meningitis. Came home feeling terrible, went to bed, and never woke up.

The other young man is now a trooper with the Alabama Highway Patrol. The only souvenir he has of his go-cart days is a scar on his chin.

These people are gonna kill me!

I don’t think I’ve written much about my second operation. It went so well, I really just hadn’t thought about it. “It went well” is relative, of course… at the time, I thought that I had been hit by a large truck! And that I was going to to be beaten to death.

After being informed that Elevator Sprints was a game that I didn’t need to be playing – even if I was one of the Co-creators – I didn’t cause any more trouble for the hospital staff. But trust me, they got me back, in spades!

I left my room one day to walk up and down the halls (one of the few things you can do when stuck in a hospital) and next to the door was a gurney. Someone had written on the plastic cover

Steve C****

Bed 3, Rm 406

Surgery 3/17/77 0800

Oh, boy. I don’t think that it had “clicked” in my head before that that these people meant to cut my chest open! I ran back into my room, jumped into my bed like Pete Rose sliding into second base, and cried my eyes out. Not a manly thing to do, but I was eleven years old, so I’m pretty sure that it was OK.

The day of surgery was kind of strange, too. The operation was scheduled for 8:00 AM, but when I woke up in recovery, I was in for quite a surprise. I was facing a large plate glass window that overlooked the city, and it was night! Exactly how long did that surgery take?

It turns out that it lasted about as long as they expected it to last – but there had been a serious accident on the interstate. I never heard exactly what happened, but a lot of people came into the ER at about the same time, and a good number of them needed surgery. All the “routine” surgical patients got rescheduled while the critical patients went first.  Since I had already been sedated, they just kept me under a very light sedation until my turn came. Thankfully my parents had heard about the delay so they weren’t climbing the walls.

When my turn finally did come, the operation went smoothly. I was supposed to have a Blalock-Taussig Shunt, but they were worried about finding a vein that was large enough to act as the conduit. (No MRI scans in 1977!) Thankfully, it was big enough to do the job!

I didn’t get a Cough Bear after my surgery. I didn’t even get a pillow – remember this occured in 1977, and no one had thought about using a soft object to brace against when you cleared your lungs yet. In fact, the accepted practice for cleaning your lungs out will make most modern cardiac patients cringe.

Two nurses would come into your room and help you sit up. Then they would get you to lean forward as much as you could, and when you couldn’t go any further, one of the nurses would take you by the shoulders and lean you over another few inches. Then the other nurse would cup her hands and pound on your back – HARD!

After you were beaten like a tough steak you were told to cough into a cup. The purpose of this form of torture was to prevent mucus from building up in your lungs and causing pneumonia. I was hoping that there would be a river of mucus – enough to get these nurses (literally) off my back!

You could always hear echos of their slaps as they worked their way down the hall. To hear them getting closer and closer caused more fear than any movie Wes Craven ever made. But once, they reversed their usual pattern and started at my end of the hall. I was number one on the list. These ladies were warmed up and ra’ring to go when they hit my door.

After a particularly ferocious lung clearing series of smacks, I coughed up my liver and gasped, “I don’t know what I did to make you ladies angry, but I sincerely apologize!”

Don’t let the Water get in the Boat

I was back at the University of Alabama at Birmingham (UAB) in May of 1988, getting ready for one last heart operation. My Cardiologist had sat down with my parents and I at an earlier appointment and discussed possibly performing a version of the Fontan Procedure (See “A Final Note:” at the end of this post!) on me. It was really a two stage operation, but my first two surgeries roughly equaled the first part of the Fontan, so I would only need the second part of the operation. I would never be normal, my Cardiologist told me, but this final operation would bring me as close to being heart healthy as I would ever get.

This was the first time that everything hinged on my decision. I had been underage for my previous surgeries, so the responsibility had fallen to my parents. Since I had just turned 21, this time the Go/No Go was my decision. After steeling myself to the thought of all the pain and recovery time that would be involved, I decided to have it. All of the testing and X-rays had given my surgeon the information he needed to devise a plan he was confident in, and he and his team met with me the night before.

“Any questions?” he asked.

“Just don’t start without me,” I joked.

Dr. Albert Pacifico had been my heart surgeon the first time I had been a patient at UAB in 1977. Pacifico is known for two things: being good, and working fast. He averages eight heart operations a day, when the typical surgeon performs two a week. As far as Cardiac Surgery is concerned, he’s the superstar.

The next day, the crap hit the fan. As soon as the surgical team opened my chest, things began to spin out of control. Opening my rib cage tore some scar tissue that had became attached to the back of my rib cage, and I began to bleed profusely. Dr. Pacifico was world renowned and had probably performed more heart operations than anyone alive, and he needed every bit of that skill to get the bleeding under control. “Imagine your chest cavity is a boat, and your blood is water,” he later said as an explanation. “You never want to get too much water in the boat.”

“Shoot, doc,” I groaned. Talking after surgery isn’t the easiest thing to do. “You should have woken me up. I would have bailed out the boat while you fixed the leak.”

The leak was starting to get ahead of him; every time he sealed one bleeder another would pop open. I was bleeding out faster than the surgical team could put it back in.

As he always did, the surgeon came down to a Conference Room where the families of his patients had been summoned. He normally called out a name, and the family members would group around him as he consulted an index card and summarized the operation. (This was a long time before Health Record Privacy became such an important issue.)

“I will speak to you two last,” he told my parents. My mother gasped and began to cry.

The Patient Representative stepped forward. “That’s not the way we handle that,” she said, placing enough emphasis on the word so there was no doubt what THAT was.

The news still wasn’t good. The bleeding had been stopped, but I had required 20+ units of blood. A lot of water had gotten into the boat. I was in recovery, but I wasn’t recovering. I wasn’t going downhill, either; so you could say I was just holding my own. And then he said the phrase that has come out of every surgeon’s mouth:

“We’ll know more in a few hours.”

The waiting room was huge. UAB had designed a building that contained all of its surgical suites and all of the recovery areas, which meant the entire ground floor was a unit’s waiting room. The surgical unit waiting area was over there, while ICU was here, and surgical recovery over there, but if you took out the walls you would have one large room.

So the families sat and waited, talked, and followed each other’s progress. A good report cheered everyone, while bad news made the room grow somber. A young lady – my father thought she was a teenager, but he later learned she was an adult who ran a hairdressing shop in a nearby suburb – heard about me and gathered her friends. “We need to pray for this young man,” she said.

At about the same moment, my surgeon sat by my bedside in Recovery and studied my chart. He was by himself, which was quite unusual. Pacifico was usually at the head of a five to ten person entourage. And he had been reading for an hour, which was also quite unusual for him. Finally he snapped the chart shut and ordered a change in my medications, and from that point on I began to improve.

A miracle? The skill of an experienced, trained surgeon? “Yes” is the answer to both questions. I believe God still works miracles, and I also believe that He does a lot of them without any fanfare. Heart Surgery is a modern miracle, but what about the guy who invented the Band-Aid? His little idea has probably saved just as many lives, and possibly more.

This story doesn’t end here. A few years later, my cardiologist commented, “It’s probably a good thing that there was so much trouble when we tried to perform that Fontan on you. We’re learning that it’s not working as well as we hoped, and some of those who have had it are actually worse off than they were before.”

The hero you find may not be the hero you are looking for.

A Final Note: As I mentioned, these events occurred in 1988. The Fontan Procedure that was to be performed on me (And that eventually showed poor outcomes) is not the Fontan that is being performed today. The operation has undergone several revisions and is now much more effective.