Johnny was not supposed to live as long as he did.
The day Johnny was born, Larry and friends hung a huge banner across the upstairs front of the restaurant proclaiming "IT'S A BOY!"
The day he was diagnosed with hypoplastic left heart syndrome (his left ventricle - the heart chamber that pumps oxygenated blood to the body - never formed; it was missing) the folks at Children's Hospital in DC assigned to hold distraught parents' emotions and hands provided a booklet on newborn heart maladies. The one page devoted to hypoplastic left heart syndrome, actually one paragraph, said, in effect, very little can be done. Take the infant home and make him/her as comfortable as possible. The end can be expected within four months. There was absolutely nothing comforting about that.
The banner at the restaurant came down that day.
Hypoplastic left heart babies, like Johnny, live a short while without medical intervention because God provided the fetal heart with an interesting little "tube" called the ductus areteriosus. Yes I said God because any idiot who believes in the chaos theory or any other such nonsense never studied science or the intricacies of life at any stage. The ductus areteriosus allows blood to flow around the fetal lungs. After birth when the lungs start receiving air, the ductus shuts down. It's not needed. In Johnny's case, as long as it remained open his body didn't notice the problem with his heart. Ironically a ductus that remains open (patent ductus arteriosus - where "patent" means "open") is a problem that needs medical attention to close it.
Johnny's ductus arteriosus was quite normal and started to close his first day home. I was working at my family's restaurant. When I arrived home, he was very very pale with shallow breathing and quite listless. The emergency advice from the HMO said to bring him to their facility at 19th and Pennsylvania Avenue NW near George Washington Hospital. That was about 20-25 minutes away. The drive led past Children's Hospital. At the entrance to Children's Emergency room, I made a fast right and pulled up to the door. His mother took him in and I drove off to park the car.
As I walked into the lobby entrance, people were running from every direction. They were running to save Johnny's life.
I learned years later that the concept of six levels of separation or however that goes is all too correct. In the emergency room at that time was the MD sister of a good friend who was visiting the cardiologist assigned to Johnny. The two sisters are cousins of my best friend from grade school, Kevin Callahan. The sister I knew from Kevin's wedding dated the cardiologist years before. The sisters' dad was at the time the head of pediatrics at Harvard Medical School.
Johnny had been literally drowning in his own blood. When the ductus shut down, the blood just started flowing into his lungs with no way to get to the missing ventricle where it was supposed to be pumped, fresh with oxygen, throughout his body. His veins had collapsed so badly that the docs working on him kept slashing at his ankles to gain entry to replace the precious fluid. They managed to stabilize him and diagnose the problem.
The cardiologist who labored so long to save him, appeared in the waiting room and asked the most basic question relative to the situation: "do you want to let him live?" The alternative was not an option. My "yes" opened the door to more open heart procedures than a grown man or woman can handle, much less a less a three-day-old infant. But it was the door we walked through.
Dr. Midgely performed the first of three surgeries Johnny was to have over the next three years. At barely a week old, Johnny's heart was about the size of my thumb nail. Dr. Midgely performed what's called a Norwood procedure where he switched Johnny's cardiac plumbing to allow a mix of oxygenated and oxygen depleted blood to mingle and flow throughout the body. Suffice to say, in the Norwood the blood flow is redirected by some very complex snipping of the main pulmonary artery and connecting it to the aorta. Tiny arteries and veins are stitched together and a shunt inserted to complete the new circulatory system.
Dr. Midgely was one of the kindest, most soft-spoken, gentle person I've ever met. He was also a jogger. One day as he did his daily jog around the questionable streets surrounding Children's Hospital an asshole of a DC policeman decided Dr. Midgely was endangering traffic and claimed Midgely was belligerent after wrestling the surgeon to the ground and nearly dislocating his shoulder twisting his arm to cuff him. I might add that it was during the tenure of the DC Chief who hired his pals from the streets who sported criminal records and who, in record numbers, became even worse criminals - armed robbers, murderers, and "enforcers" for drug dealers while in uniform. DC then was often described as a very corrupt Third World nation. I do not exaggerate.
About six or so months later, Dr. Midgely performed a second procedure called the bi-directional Glenn. It was developed to allow the infant and his/her heart to get stronger before the final Fontan operation is performed. It decreases the workload on the right ventricle by shunting oxygen-depleted blood from the upper body directly into the pulmonary artery bypassing the heart.
I suspected that God had something special in store for Johnny because the bi-directional Glenn was developed shortly after he was born. When he was born, it didn't exist. It would have been two to three years before he would have been given the final Fontan procedure. Without the bi-directional Glenn, chances are the pulmonary vein system would harden making the Fontan either impossible to perform or making it less likely to succeed for very long. Dr. Glenn's idea increased the survival rate of Fontan patients to 90 percent.
(At the time, the practice among East Coast pediatrics was to perform the Norwood, Glenn and Fontan to save Hypoplastic Left Heart infants. On the West Coast, they preferred heart transplants. In Canada, parents either came to the Lower 48 for life-giving surgery or watched their children die thanks to that country's socialized medicine.)
The Fontan completes the conversion of transforming the right ventricle into the vehicle that performs the chores of the missing left
ventricle, normally the much more muscular of the two as it pumps oxygen-rich
blood throughout the body versus the right ventricle's task of pumping it to the
lungs for an oxygen recharge.
Not only was Johnny's timing right to benefit from the bi-directional Glenn but an even more ironic incident occurred at the family restaurant.
One day the head of pediatrics at Washington Hospital Center came into the restaurant with his wife for a late lunch. How they decided on our place, I used to call the "stealth restaurant" because you could pass right by it and never know it was there, I can't fathom to this day. I was out of the kitchen and struck up a random conversation with the two. I told them Johnny was born at WHC. I also mentioned his heart connection and that he was awaiting the bi-directional Glenn. Turns out the doctor's wife is a nurse who worked with Dr. Glenn and helped him develop the life-saving operation.
I couldn't believe it. Neither could they.
(to be continued...yet again)
Tuesday, February 28, 2012
Saturday, February 18, 2012
Part I of the Blog I May Not Yet Be Able to Write
In 1984 my father died.
My dad was a pretty amazing person. For years before and after, I would run into people who knew either him or something related to him. Once, during a taxi ride to Capitol Hill for some NRA business, I had the feeling that the driver was part of Washington that was of my father's era...a time when the media meant the Daily News, The Washington Post, The Washington Time Herald and The Evening Star. Dad read them all faithfully. Back then despite the historians' accounts to the contrary, the social and racial "barriers" were not all that important. At least they weren't to real Washingtonians who grew up in neighborhoods that were Italian and Jewish and Greek and Black and Irish and the mutts who mixed a little bit of everything in their bloodlines.
The driver was black with an attitude we now see only in "comfort food." He seemed like an old neighbor or cousin with the only difference a bit more pigment than most of my family except during the summer months. At any rate I opened the conversation with "did you know Coolbreeze or maybe you knew him as 'Johnny the Breadman.'" The look and smile that came over the taxi diver could have been straight from Morgan Freeman in "Driving Miss Daisy."
"Most honest bookie in DC! Aways paid off if you won."
He donated bread or paid for the food for banquets honoring inner city kids. He got jobs for youngsters suffering physical or mental handicaps. Where "professionals" in the medical fields failed, he was able to get severely autistic kids to respond to the kindness in his soul. He ignored the black/white employment barriers in place when he drove a County Fair (now Wonder) Bread truck. Then Blacks were only allowed to load and unload the trucks and do janitorial type chores around the bakery. Dad said "bullsh*t" and trained the first Black truckdriver/salesman in the city. We knew him by the name "Diddie."
One of the stops he served (places where he delivered bread) was Georgetown University. Some students asked him for advice on how to set up a student run deli on campus. In return they named their Italian coldcut sub "The Aquilino."
During the riots, when DC police were standing guard against looters over Georgetown shops, he bought a few cases of glass bottle Coca Colas and ducked into, I think Clydes (also one of his stops). He poured half the content of each bottle out and replaced it with (my guess) bourbon or VO or Canadian Club then went outside and gave each officer lining the blocks a bottle. His way of making the best of a difficult time.
Oh, I might add this too. The County Fair Bakery was located off an alley near the old Griffith Stadium. I think it was "S" Street. As he drove his truck down the alley, one of the "rioters" spit on his windshield and let loose with some unflattering words about white folk. The truck had no doors so it only took a moment for the angry gent to catch a glimpse of the white guy driving the vehicle. When he realized it was my dad, the good fellow said something to the effect of "Scuse me, CoolBreeze" and used his sleeve to wipe clean the windshield.
That was my dad.
After the funeral and after I returned to work at NRA, I got a phone call from a retired DC cop. I won't mention his last name but he was one of the great ones...and I've known and admired more than a few. He was a friend of my father's. He became a friend of mine despite the age difference. His first name was George.
"John. It's going to take about three years before the loss of your father really hits you." We chatted about his father's death and my father's life.
I've always tried to emulate my dad in that I didn't and don't believe lying to anyone is worth the effort. I also don't tolerate pure BS from anyone no matter their status in life. Might explain my face-off with General Swartzkopf years ago and why I consider him a colossal ass today. But I digress.
George was right. About three years later, while driving God knows where and quite alone, without warning the tears began to flow.
But no one ever told me about the time line associated with the death of a child. No one told me whether it was right or wrong to become infuriated at the sight of a child whose embalmed flesh or at least what you could see unhidden by the burial suit looked exactly like the cadavers from the German death camps that I've viewed countless times over the past six decades plus. From the first time I saw those photos, I hated what the Germans did during the decade in which I was born. Those images stay with me whenever anyone mouths the word "Jew" in a demeaning way. They are part of the reason I will never buy into the gutless nonsense spewed by oh so nice people who "deplore" guns and military responses to those who do evil. The analogy is not a stretch. To use the socially acceptable term, his body was cremated without me or his brother being consulted or being able to voice our objections. Cremated...burned...what's the damn difference?
Johnny's fingers in the coffin were shrunken...the flesh missing with skin clinging to meatless bones.
I can't express the horror that swept through me at the sight the day of his funeral.
Today, two years later, the phone call I received the night he died continues to haunt me.
"Johnny's dead. He gave up. He just quit eating."
I can honestly believe Johnny "gave up." He was taken from his friends. He was taken from his family. He could not speak although his facial expressions were quite eloquent. He couldn't move. He was kept in a dimly lit room watching videos over and over.
But, the concept that "he just quit eating" made no sense. It made no sense in exactly the way that his mother described him liking, I believe, a chocolate flavored nutrition drink more than other flavors made no sense.
Johnny didn't eat. He couldn't distinguish flavors. He was fed via a machine/pump and a tube that fed directly to his stomach. No tastebuds there.
Johnny far outlived the years his physicians predicted he would thrive. (To Be Continued.)
My dad was a pretty amazing person. For years before and after, I would run into people who knew either him or something related to him. Once, during a taxi ride to Capitol Hill for some NRA business, I had the feeling that the driver was part of Washington that was of my father's era...a time when the media meant the Daily News, The Washington Post, The Washington Time Herald and The Evening Star. Dad read them all faithfully. Back then despite the historians' accounts to the contrary, the social and racial "barriers" were not all that important. At least they weren't to real Washingtonians who grew up in neighborhoods that were Italian and Jewish and Greek and Black and Irish and the mutts who mixed a little bit of everything in their bloodlines.
The driver was black with an attitude we now see only in "comfort food." He seemed like an old neighbor or cousin with the only difference a bit more pigment than most of my family except during the summer months. At any rate I opened the conversation with "did you know Coolbreeze or maybe you knew him as 'Johnny the Breadman.'" The look and smile that came over the taxi diver could have been straight from Morgan Freeman in "Driving Miss Daisy."
"Most honest bookie in DC! Aways paid off if you won."
He donated bread or paid for the food for banquets honoring inner city kids. He got jobs for youngsters suffering physical or mental handicaps. Where "professionals" in the medical fields failed, he was able to get severely autistic kids to respond to the kindness in his soul. He ignored the black/white employment barriers in place when he drove a County Fair (now Wonder) Bread truck. Then Blacks were only allowed to load and unload the trucks and do janitorial type chores around the bakery. Dad said "bullsh*t" and trained the first Black truckdriver/salesman in the city. We knew him by the name "Diddie."
One of the stops he served (places where he delivered bread) was Georgetown University. Some students asked him for advice on how to set up a student run deli on campus. In return they named their Italian coldcut sub "The Aquilino."
During the riots, when DC police were standing guard against looters over Georgetown shops, he bought a few cases of glass bottle Coca Colas and ducked into, I think Clydes (also one of his stops). He poured half the content of each bottle out and replaced it with (my guess) bourbon or VO or Canadian Club then went outside and gave each officer lining the blocks a bottle. His way of making the best of a difficult time.
Oh, I might add this too. The County Fair Bakery was located off an alley near the old Griffith Stadium. I think it was "S" Street. As he drove his truck down the alley, one of the "rioters" spit on his windshield and let loose with some unflattering words about white folk. The truck had no doors so it only took a moment for the angry gent to catch a glimpse of the white guy driving the vehicle. When he realized it was my dad, the good fellow said something to the effect of "Scuse me, CoolBreeze" and used his sleeve to wipe clean the windshield.
That was my dad.
After the funeral and after I returned to work at NRA, I got a phone call from a retired DC cop. I won't mention his last name but he was one of the great ones...and I've known and admired more than a few. He was a friend of my father's. He became a friend of mine despite the age difference. His first name was George.
"John. It's going to take about three years before the loss of your father really hits you." We chatted about his father's death and my father's life.
I've always tried to emulate my dad in that I didn't and don't believe lying to anyone is worth the effort. I also don't tolerate pure BS from anyone no matter their status in life. Might explain my face-off with General Swartzkopf years ago and why I consider him a colossal ass today. But I digress.
George was right. About three years later, while driving God knows where and quite alone, without warning the tears began to flow.
But no one ever told me about the time line associated with the death of a child. No one told me whether it was right or wrong to become infuriated at the sight of a child whose embalmed flesh or at least what you could see unhidden by the burial suit looked exactly like the cadavers from the German death camps that I've viewed countless times over the past six decades plus. From the first time I saw those photos, I hated what the Germans did during the decade in which I was born. Those images stay with me whenever anyone mouths the word "Jew" in a demeaning way. They are part of the reason I will never buy into the gutless nonsense spewed by oh so nice people who "deplore" guns and military responses to those who do evil. The analogy is not a stretch. To use the socially acceptable term, his body was cremated without me or his brother being consulted or being able to voice our objections. Cremated...burned...what's the damn difference?
Johnny's fingers in the coffin were shrunken...the flesh missing with skin clinging to meatless bones.
I can't express the horror that swept through me at the sight the day of his funeral.
Today, two years later, the phone call I received the night he died continues to haunt me.
"Johnny's dead. He gave up. He just quit eating."
I can honestly believe Johnny "gave up." He was taken from his friends. He was taken from his family. He could not speak although his facial expressions were quite eloquent. He couldn't move. He was kept in a dimly lit room watching videos over and over.
But, the concept that "he just quit eating" made no sense. It made no sense in exactly the way that his mother described him liking, I believe, a chocolate flavored nutrition drink more than other flavors made no sense.
Johnny didn't eat. He couldn't distinguish flavors. He was fed via a machine/pump and a tube that fed directly to his stomach. No tastebuds there.
Johnny far outlived the years his physicians predicted he would thrive. (To Be Continued.)
Monday, February 13, 2012
When Sh*t Happens to Good People
No, I'm not joining the crowd lamenting the passing of Whitney Houston. Certainly she had, at one time, a beautiful voice, a beautiful face and beautiful DNA. But, she pretty much made horrific choices on her own including creating the circumstances that led to her unfortunate demise.
I'm writing about a person who made good to great choices, who tried and is trying to lead an exemplary life - one that would humble even the most pious of saints living among us and that far out shines most in the clergy. I'm talking about a man named Tony.
Tony, by all measures, is still a young man. Good looking. Smart as hell. Married to a fine woman I've known and admired since my fumbling teen years. Successful in his profession. A full head of hair. A good man.
Tony was diagnosed with pancreatic cancer a few days ago.
Now for most of us, just the term "cancer" is an instant plunge into depression and terror. Add "pancreatic" to it and we believe, with good reason, that the end is all too near. That's not necessarily the case - if the cancer has not spread and can be excised from the pancreas. Don't know Tony's specifics. Can only hope for the best.
That said, let me tell you about what I've observed from my all too brief relationship with Tony.
We both served on the School Advisory Board for St. Jerome's Catholic School in Hyattsville when that institution of fine and family learning was run by the late Sister Joyce Volpini, SND and (not that it mattered a bit, Ph.D), a woman I truly admire, love and hold still in the highest regard.
Tony and I locked horns on many an issue while sitting across from each other at the conference table. Neither of us gave an inch to the other. Both of us felt we were right and since we are both of Italian heritage fought intellectually as if we were locked in a village or family blood feud.
The main issue over which we clashed was how best to create a capital campaign for the school and parish. We both wanted one. We just disagreed on how to achieve it. That battle was rendered moot after the idiots at the Archdiocese took off the table the option of individual parishes conducting such fund-raising efforts from among parishioners. Archdioceses within the Catholic Church and in Washington DC in specific are too often run by political types posing as spiritual leaders who, in fact, are more akin to smarmy (look up the definition online at "Urban Dictionary" where they really nailed it) politicians doling out patronage to campaign supporters. Now, again too often, this type activity is conducted by sanctimonious auxiliary Bishops with their own private agendas. Am I being too harsh in voicing my opinion there?? Tough ...t! If the shoe fits, wear it.
Don't know what Tony thought or thinks about me. I do know that I held no hard feelings and only grew in admiration for the lad.
During Hurricane Katrina, Tony took it upon himself to load up a truck of moving van size with food and drive it to New Orleans. He did it himself with no fan fare, no public or even private spotlight focused upon himself.
Tony set up the local chapter of the Catholic Business Network to bring together men and women of faith to investigate how they can use their professional expertise to help the community.
When wounded veterans of Iraq and Afghanistan began returning and the Wounded Warrior Project got started, Tony set up deer hunts for wheelchair bound vets. Of late, he created a sporting clays tournament for Wounded Warriors. Again, he did all of this operating with not the first hint of attention focused on his efforts.
I guess you could say that Tony is a prime example of the saying "No good deed goes unpunished" from the point of view of his being diagnosed with cancer. On the other hand, as my blog title suggests, he is also an example of my effort to insure that "No good deed goes unpublished"!
Tony is one of the best friends of a man I also admire and consider one of my best friends, Chris Carroll. Chris is one of 14 children and I've the honor of knowing his siblings (each as nice and fine as the next) and their incredibly wonderful mother who I believe is 91 and still an active stalwart of the parish and community. And, yes, they are direct descendants of the Carroll who signed the Declaration of Independence and the fellow of the same name who was, I believe, the first Archbishop in Maryland back in the day when even Irish folks over here were considered British citizens.
If there is anything about Tony that I don't know, and that I'm sure is a lot about the boy, then let me say this, the depth of quality of the man can be measured in value by the relationship he enjoys with his touchstone: Chris. (Look up touchstone while you are at it and you'll understand all the various aspects of my allusion.)
I'm not saying goodbye to Tony. I'm hoping he musters all his courage and faces this as he seems to have faced most of the challenges life's thrown at us all. A positive attitude when dealing with the big C is imperative. There are at least 15 research protocols in treating pancreatic cancer now being conducted at NIH with amazing progress towards thwarting cancers of all types at research institutions throughout the country and the world. So I have hope that Tony will beat this threat and we can enjoy him with us for many, many years to come.
I'm writing about a person who made good to great choices, who tried and is trying to lead an exemplary life - one that would humble even the most pious of saints living among us and that far out shines most in the clergy. I'm talking about a man named Tony.
Tony, by all measures, is still a young man. Good looking. Smart as hell. Married to a fine woman I've known and admired since my fumbling teen years. Successful in his profession. A full head of hair. A good man.
Tony was diagnosed with pancreatic cancer a few days ago.
Now for most of us, just the term "cancer" is an instant plunge into depression and terror. Add "pancreatic" to it and we believe, with good reason, that the end is all too near. That's not necessarily the case - if the cancer has not spread and can be excised from the pancreas. Don't know Tony's specifics. Can only hope for the best.
That said, let me tell you about what I've observed from my all too brief relationship with Tony.
We both served on the School Advisory Board for St. Jerome's Catholic School in Hyattsville when that institution of fine and family learning was run by the late Sister Joyce Volpini, SND and (not that it mattered a bit, Ph.D), a woman I truly admire, love and hold still in the highest regard.
Tony and I locked horns on many an issue while sitting across from each other at the conference table. Neither of us gave an inch to the other. Both of us felt we were right and since we are both of Italian heritage fought intellectually as if we were locked in a village or family blood feud.
The main issue over which we clashed was how best to create a capital campaign for the school and parish. We both wanted one. We just disagreed on how to achieve it. That battle was rendered moot after the idiots at the Archdiocese took off the table the option of individual parishes conducting such fund-raising efforts from among parishioners. Archdioceses within the Catholic Church and in Washington DC in specific are too often run by political types posing as spiritual leaders who, in fact, are more akin to smarmy (look up the definition online at "Urban Dictionary" where they really nailed it) politicians doling out patronage to campaign supporters. Now, again too often, this type activity is conducted by sanctimonious auxiliary Bishops with their own private agendas. Am I being too harsh in voicing my opinion there?? Tough ...t! If the shoe fits, wear it.
Don't know what Tony thought or thinks about me. I do know that I held no hard feelings and only grew in admiration for the lad.
During Hurricane Katrina, Tony took it upon himself to load up a truck of moving van size with food and drive it to New Orleans. He did it himself with no fan fare, no public or even private spotlight focused upon himself.
Tony set up the local chapter of the Catholic Business Network to bring together men and women of faith to investigate how they can use their professional expertise to help the community.
When wounded veterans of Iraq and Afghanistan began returning and the Wounded Warrior Project got started, Tony set up deer hunts for wheelchair bound vets. Of late, he created a sporting clays tournament for Wounded Warriors. Again, he did all of this operating with not the first hint of attention focused on his efforts.
I guess you could say that Tony is a prime example of the saying "No good deed goes unpunished" from the point of view of his being diagnosed with cancer. On the other hand, as my blog title suggests, he is also an example of my effort to insure that "No good deed goes unpublished"!
Tony is one of the best friends of a man I also admire and consider one of my best friends, Chris Carroll. Chris is one of 14 children and I've the honor of knowing his siblings (each as nice and fine as the next) and their incredibly wonderful mother who I believe is 91 and still an active stalwart of the parish and community. And, yes, they are direct descendants of the Carroll who signed the Declaration of Independence and the fellow of the same name who was, I believe, the first Archbishop in Maryland back in the day when even Irish folks over here were considered British citizens.
If there is anything about Tony that I don't know, and that I'm sure is a lot about the boy, then let me say this, the depth of quality of the man can be measured in value by the relationship he enjoys with his touchstone: Chris. (Look up touchstone while you are at it and you'll understand all the various aspects of my allusion.)
I'm not saying goodbye to Tony. I'm hoping he musters all his courage and faces this as he seems to have faced most of the challenges life's thrown at us all. A positive attitude when dealing with the big C is imperative. There are at least 15 research protocols in treating pancreatic cancer now being conducted at NIH with amazing progress towards thwarting cancers of all types at research institutions throughout the country and the world. So I have hope that Tony will beat this threat and we can enjoy him with us for many, many years to come.
Subscribe to:
Posts (Atom)