Posts Tagged ‘Heart Dad’

In the balance

October 1, 2010

Bad news from Team Ewan. The doctors got him off the  ECMO machine, but a few hours later he began to slip; badly enough that he’s back on it.

We know we have some tough decisions to make in the next day or two. Barring a miracle, we’re faced with the following decision: do we let him go, or do we send him back to the cath lab for a procedure that might rupture his pulmonary arteries?

This family needs your thoughts right now as they prepare to make this choice.

Miracles

September 27, 2010

If only you believe in miracles, baby (like I do)
We’d get by

Miracles, Jefferson Starship (1975)

I was concerned about traffic (traffic in downtown Charleston,  South Carolina can be a nightmare; almost every street is One Way) so I intentionally planned to arrive at the Palmetto Hearts Pediatric Cardiology Reunion early. A little too early, as I was the first CHDer on the scene… oops! But the wait wasn’t long, and before I knew it the entire museum was full of Cardiac Kids and Heart Parents. The oldest CHDer I met was a 16-year-old with HLHS (I never got your Facebook Friend request, Johnathan! Try it again, please!) but most of them were under 10 years old.

When you are that young, your heart is roughly the size of your fist. Imagine operating on an organ no bigger than an infant’s fist, cutting it open to find and repair a hole that isn’t supposed to be there. Imagine finding two blood vessels that are measured in millimeters – these blood vessels are connected to the tiny heart but they are in the wrong place, and it is your job to cut them, switch them, and sew them into the tiny hole where the other vessel was.

Imagine looking into the chest of an infant with part of his heart missing. It’s supposed to be the size of a walnut, but part of it is missing, so there isn’t even that much. As my grandma used to say, “There’s not enough space in there to change your mind.” No, there isn’t enough space to change your mind – but there is plenty of room to screw up, to shatter an already broken heart, to ruin a life and a family forever.

I didn’t talk to many of the children – If you were a child, which would you rather do: talk to the adult you don’t know or play with all the cool stuff in a Children’s Museum – but I did talk to a lot of their parents. I heard tales of living in the waiting room.

Staying by the bedside.

Waiting for a miracle.

That’s what I saw at the Pediatric Cardiology Reunion I attended Saturday night… miracles. A lot of them. Walking, talking, miracles.

Update on Zeb

March 7, 2010

Zeb is doing better! The chest tube has been removed and the doctors are making noises about his coming home in a day or two! It can’t happen too soon, because the young man is scooping up all of the attention! His nurses are crazy about the little guy!

But we have a problem – Zeb doesn’t want to take his medication! That’s not good at all – some think that after being in pain a few nights ago, he now believes that the medication actually causes the pain… whenever it is time for meds, Zeb turns into a clam. Nuttin’ is getting past those lips, no way, no how!

Hopefully he will realize that his medication is a very important part of getting well and he’ll be on his way back home soon.

The Road to Baltimore

February 17, 2010

“You got how much snow?” I asked.

“About four inches,” my father said. My flight had left South Carolina about 9:00 AM Friday morning; and the snow had begun to fall about 4:00 PM. I called home Saturday morning like I usually do, and my father had told me about the unusual snowfall.

In just a few hours I was scheduled to speak to the members of the Broken Hearts of the Big Bend, and I planned to speak about my first heart operation. And now my dad is telling me about snow on the ground back home.

Deja vu all over again, as Yogi Berra might say. I was getting ready to talk about how my parents drove from South Carolina to Baltimore, fought through the worst snowstorm in recent memory (Baltimore’s 24 hour snowfall total that night has been topped twice since then) to get me to Johns Hopkins Hospital for my first heart surgery. And my father is talking about snow on the ground. If there was ever a sign that I needed to say what I had planned, this was it.

My dad is a retired textile chemist who has worked in cotton mills and fabric manufacturers all his life. He occasionally calls himself a linthead, an old term left over from the days when cotton mills peppered the South Carolina landscape. My mom also worked in textiles, usually on the retail end.  But on one night in early 1967 these two Southerners went above and beyond the call and in the process became Heart Parents.

I won’t tell the story again; I posted the text of my presentation and also a video of my speech earlier. My audience was made up of Heart Parents, most of them young, just like my dad and mom were. They have the advantage of having the internet, overwhelming amounts of information, support groups, and instant communication. My parents were on their own and knew no one else who had ever been through anything like this.

You need a special kind of strength to dig your heels in and fight against Heart Defects. Two lintheads from the cotton mills found theirs on the road to Baltimore… and that same strength is in you.

Heart Moms and Heart Dads

February 13, 2010

This is the text of my presentation to the Broken Hearts of the Big Bend Regional Conference on Congenital Heart Defects. (February 13, 2010, Tallahassee, Florida)

My name is Steve Catoe, and I was born in 1966 with a Congenital Heart Defect known as Tricuspid Atresia. If you are not familiar with that defect, Tricuspid Atresia means that my Tricuspid Valve – which is the door connecting the Right Atrium to the Right Ventricle – does not exist. Because of it, my Right Ventricle is very small and almost cut off from the rest of the heart.

I write a blog named “Adventures of a Funky Heart!”, where I write about growing up with a heart defect, the latest in Congenital Heart research, and news about advances in the field. I try to make it interesting and use a little humor, so hopefully you’ll keep coming back and reading every day. Hopefully I can help you by giving you information about heart defects that you can use – and I try to do it a little bit at a time, so you don’t feel like you are trying to drink directly from a fire hose.

Usually when I get a chance to speak to a group I talk about spreading awareness and I talk about our Cardiac Kids and I talk about adults living with a heart defect, who I call Heart Warriors. I’m scheduled to be on the Adult Survivors Panel too, and I plan to be around for the rest of the day, so if you want to talk to me about anything I’ll be here. But I asked for a little bit of extra time to tell you a story.

I was born on a Tuesday, and on Friday, they started to realize that something wasn’t right. I don’t know if my mother noticed it first, but that was probably the way it happened. Moms know their babies, and they are almost always the first one to pick up on any problem.

So they took me to my pediatrician, who figured out that I had some type of heart problem, but he wasn’t sure what. So he sent me to the nearest hospital that could help me.

The doctors there told my parents that I had Tricuspid Atresia, and they should take me home and love me, because I wouldn’t be here that long. Well my parents didn’t think a whole lot of that statement, and neither did my doctor back home. In fact, he said it was completely unacceptable.

So he found four places that could try a surgical repair: Johns Hopkins, Mayo Clinic, the University of Virginia, and the Texas Heart Institute. Mayo and Texas he threw out because of the travel distance. Virginia, which was his own medical school, he eliminated because he didn’t think they had enough experience. That left us with Johns Hopkins. He called, and things were set up for that summer. My parents would take me to Baltimore, I would be evaluated, and if possible, the Hopkins surgeons would attempt the surgery.

That night all hell broke loose. I went into heart failure, my heart rate shot up to 200 beats per minute, and I was rushed to my local hospital. I was there a week while they tried to get me stabilized; in the meantime, my pediatrician was working the phones, relaying information about me to the Hopkins doctors. They were telling him that I needed to get there as soon as possible.

Dad picked me up at the hospital and drove home to pick up momma, and we immediately left for Baltimore. Remember this occurred in 1967; I-95 hadn’t been completed yet. After driving all day they needed a break, so they stopped at a hotel in Petersburg, Virginia.

They had been asleep about an hour when Momma got up to check on me. She happened to glance out the window and it was snowing as hard as she had ever seen it snow. She woke daddy up, and we were back in the car and moving within a few minutes.

Cars were stuck in the snow all along the roadway, and daddy was stopping every fifteen minutes to wipe the windshield off with an old rag. When they passed through Washington he actually thought about putting me and momma on a train to Baltimore and catching up to us later. It’s a good thing he didn’t, because he found out later that the snow was so bad that the railroad shut down their trains for the night.

Three families were expected by the Children’s Medical Center that day, but we were the only ones who made it. The doctors examined me and then asked my parents for permission to do a Catherization. After the Catherization, the head Cardiologist came out to talk to my parents.

“He is down to hours,” he said. “We need to operate right now.” He added that my odds of surviving the operation were 50-50 but without it I had no chance. My parents had about five minutes to discuss it before they had to decide to risk the surgery or just let me slip away.

I was taken into the operating room at 10:30 that night, and the operation ended about three in the morning. My folks didn’t leave the hospital until they saw me afterwards, so it was almost daybreak when they went to a boardinghouse about a block away.

I have to admit that I begged Karen and the organizing committee for a few moments to speak to you today, almost to the point of embarrassing myself. Because that surgery took place on the night of February 17, 1967 – almost 43 years ago. My parents are just ordinary people; but that night they turned into a Heart Mom and a Heart Dad just like you. And I’m here today because they have always been willing to ask one more question, explore one more option, and go one more mile.

So I wanted to take a few moments and tell you my story, encourage you to hang in there no matter what, and on behalf of all the Cardiac Kids and Heart Warriors, to just say Thank You.

Taking Tallahassee by storm!

February 9, 2010

I am really looking forward to the Regional CHD Forum sponsored by Broken Hearts of the Big Bend. We’ll be at Sittig Hall in downtown Tallahassee – not very far from the State Capitol building!

Just like at Lobby Day and the Duke CHD Symposium, I plan to liveblog the event. Check Adventures of a Funky Heart! around 8:30 AM Eastern Time Saturday morning; If you see a new post, I’m hooked in to the Wi-Fi and I’m blogging! I’ll add information pretty often. Just keep refreshing the page, and you can keep up with events LIVE!

And if there’s no Wi-Fi available, check the blog that night. I’ll be keeping notes and will type up a post later. I’ll also post the text of my presentation after I present it. (Wha..? You expect me to blog AND speak at the same time? I’m not that good!)

I also have a little surprise for you –

there might…

possibly….

with a little luck….

be some VIDEO!

Video depends on if the unit actually does what the manual says it will do, so it’s still up in the air!

The Forum is going to be a lot of fun… and if you live in the area and fight CHD, the organizers would love to have you join their team! So if you like what you see, check them out!

The Letter

October 27, 2009

As you may know, my grandmother passed away in early September. The shock has worn off and now we are knee deep in the difficult task of cleaning out her home.

Grandma kept everything. We really need to hire a Forensic Document team, because our most difficult task has been sorting through all of her Medicare/Medicaid paperwork, old claim forms and payment notices and trying to figure out what is important and what is not. We’re finding those government “THIS IS NOT A BILL” notices from the 1980’s – like I said, she kept everything.

Hiding in a drawer we found a yellowed envelope with my father’s handwriting. The return address was… Baltimore?

February 25, 1967

We have just returned from the hospital. We talked with one of our doctors and he seemed pleased with Steven’s progress…I am beginning to feel a little better about him now.

Written eight days after my first surgery, I’m not sure I can describe the wave of emotions I felt reading this letter. A Heart Dad for five months, my father had already done what was needed: driven me from South Carolina to Johns Hopkins, the best hospital in world, in the middle of a terrible snowstorm. Driving half way and stopping for the night, my parents got about an hour’s rest before momma woke up, looked out the window and saw that it was snowing. She woke daddy up and we were in the car in fifteen minutes. Cars were stuck in the snow all the way to Baltimore; and what could a lifelong Southerner know about driving in the snow? But they made it – three families were expected by the Cardiac Clinic that day, and we were the only ones who arrived.

The top doctor is Dr. Richard Rowe. He is a very small man about 50 years old, and Dr. Smith (my Pediatrician back in SC) says he is the best in the world. It is not hard to tell that he knows what he is talking about when he speaks… He sits down and talks with us in terms I can understand.

The Hopkins team examined me shortly after we arrived (at 10:30 PM on a Friday night; good hospitals have staff available around the clock) and Dr. Rowe came out to talk to my parents. “He is down to hours, we need to go to surgery right now.” What a decision to have to make after such a trip.

My parents spent the night in the hospital; later, a local boarding house was recommended to them. That house no longer exists. Hopkins has grown, the location of the house is now part of the Kennedy Krieger Institute. (look directly South of the Institute to see the world famous Hopkins Dome)

He will have to be operated on again… but it should be several years. That operation should cure him completely.

Rowe actually said that if there were problems, they would probably occur between my 10th and 12th year. He got it right; in February 1977 – ten years later – I started coughing up blood. That led to my second heart operation in March of 1977.

But he also got it wrong – the second operation did not cure me completely. In 1967, that was the thinking: if a child with a heart defect could make it through a corrective surgery they should do OK. Congenital Heart Surgery was only twenty years old and the oldest survivors were in their teens. No one as yet realized that a heart defect is a lifelong condition. Though I am doing great, I am not “cured.”

The letter is now in a keepsake box, along with my Rolling Stones ticket stubs, my grandfather’s 50 year employee ring, a drink coaster from London, and photographs of my nieces on the day they were born.

Hearts on the Night Shift

June 21, 2009

We’ve got to answer the call again, my friends. I was just informed that Shelby is scheduled for surgery Monday morning, a planned Glenn Shunt. Trouble is an associated Ventricular Septal Defect (VSD) is VERY large and could cause some serious problems. So if any of the Funky Heart readers are minding the store at this time of night, go to Shelby’s web page and let her parents know that you are holding them close. They will appriciate it!

Just as a thought…

June 10, 2009

If 90% or more of all children undergoing surgery to correct a Congenital Heart Defect survive to adulthood (Generally accepted percentage for the United States); and there are currently more adult CHD Survivors (1,000,000) than there are children (800,000)…. then why do a lot of this blog’s comments and my email imply that parents receive very little advice about raising a Cardiac Kid?

Hmmm…..

Thank you

June 5, 2009

I want so bad to go home and live a ‘normal’ life; a life of ‘normal’ baby ups and downs. Today our hearts broke for our son. He will have to have open heart surgery number two at just six weeks of life. That is something that no one deserves,” Lucas’ parents write on their blog. They thought that things were going well; as far as they knew they were ’rounding third and heading for home. Lucas had come through his operation, made it through Recovery and had just moved into a step-down unit. And then the bottom fell out: More than likely, they are heading back to the Operating Room.

I was chatting with some other Congenital Heart Defect (CHD) Survivors while I was in Colorado, and the subject of our childhoods came up. Even though we came from different backgrounds and our lives have taken us in different directions, we had one thing in common: strong parents. They stood up for us when we couldn’t stand up for ourselves. They sacrificed, so that we could have. They asked one more question, explored one more option, traveled one more mile, all for us.

Our parents dreams of the perfect family with the white picket fence and the dog were blown to bits in that moment when a doctor took them by the arm and said “We need to talk…” They had precious little time to prepare for the journey they would take, but they dug their heels in and stood like a rock when their world crashed down around them.  They have suffered right along with us. And some of them have found the strength to say goodbye.

I’ve been called a hero because I write this blog. I am not comfortable with that; I’m just a grown up country boy. Heart Mom and Heart Dad, if you want to see a real hero, go look in a mirror.

Until next time;