This. Again.

Even if you know bad news is coming, when it is about your children, it slams your gut like a Mike Tyson uppercut.

We knew going into yesterday’s six-month checkup it was likely doctors would determine Tyson needed another open-heart surgery. Still, hearing the words made me instantly sick to my stomach.

And, to make it worse, the doctor stressed that even with successful surgery, Tyson might have to live the rest of his life with a pacemaker.

I’m angry at the world today.

My precious 2 ½-year-old son, a shy, sweet boy who enjoys counting and weekend sleepovers in his sister’s room, doesn’t deserve the havoc wreaked on his life by the randomness of a congenital heart defect.

I should count my blessings. I have a wonderful wife and two smart, adorable children. I could not have asked for a better mate and mother. My daughter is a spitfire of a 4-year-old, a smart and sassy diva always searching for an audience for her latest song, story or other imaginative theater. My son is a reserved, introspective child who can play by himself for hours, content in solving a puzzle or organizing and counting his toys.

My wife and I both have good, fairly secure jobs. Six months ago, we bought our dream home.

I came to this wonderful life late, and it is truly more than I deserve given my youthful transgressions.

I also know there are millions of parents around the world, and many we personally know, who would rip out their own heart if it gave their child a shot at an operation that would allow them to live a “normal” life.  We are reminded of this every time we visit Children’s Hospital.

I know I should be grateful. But dammit, I am angry.

I don’t want my son on that operating table again.

I don’t want his life hanging in the balance again.

We have been through this before. For those who don’t know, my son was born with Double Outlet, Right Ventricle. To simplify, the anatomy of his heart wasn’t right. He had to be delivered at a hospital close to Children’s Hospital – with a team of emergency medical personnel on hand – so he could quickly be whisked away to the hospital’s cardiac unit.

He spent a few weeks there and eventually went home to get stronger, so he could prepare for his operation. We fed him through a tube that went into his nose. Slated to undergo a corrective surgery at six months, he couldn’t make it that long. He was two months old when they first opened up his tiny chest.

  

He survived.

We continued to feed him through a tube. Eventually, he gained enough weight to make it onto the growth chart. The tube came out. He continues to eat pretty well. At last measure, he was in the fourth percentile for weight! We take all the milestones we can get.

  

Other than the jagged scar on his chest, you would never know he has issues. He plays like any other 2 year old. He is small for his age. His speech is a little behind. But honestly, you would never know.

He has come a long way. He is a fighter.

For the rest of his life, he will have regular cardiac checkups. At his checkup last May, they told us that the natural hole in his heart – something they would normally want to close, but in his case they used to route blood flow in the initial repair of his heart – was closing on its own. Eventually, they said, he would probably need another operation. But it is risky, so let’s wait as long as we can.
 

That wait lasted six months. He will have the surgery after the holidays.

The added news is that the repair site is near the natural electrical pathways of the heart. There is a chance that the “fix” will screw with the pathways. If so, he will wear a pacemaker the rest of his life. They will implant it near the bottom of his rib cage and, as he grows, move it to his chest.

My wife asked the doctor how that would impact his life.

No contact sports. Other inconveniences. But a chance at a full life.

It just adds to the list of our worries, which total three big ones right now:

• His survival.
• The need for a pacemaker.
• The chance that these repair sites continue to close and he has to go through this every couple of years.
•  

Our one saving grace: Cincinnati Children’s Hospital. The third best children’s hospital in the nation.
 

He will have the same surgeon as last time. The gentle giant, Roosevelt Bryant III. He has already saved his life once. I know he’ll want to finish the job.

Probably the hardest thing I have ever done in my life was passing my little two-month old boy off for surgery two years ago, not knowing if I would get him back.

Now I have to do it again.

We adults know life knocks you on your ass every now and then. It is a shame my son has to learn it so often at such a young age.

My wife bought Tyson a t-shirt that says “Some Day, I Will Move Mountains.”

It is my favorite shirt.

I hope he gets the chance.

Tyson the Warrior

 

 

                                                                Tyson today

The past two days have been quite a blur.

From the gut-wrenching handoff to the surgery team early Monday morning, to the euphoria of the surgeon arriving seven hours later to tell us the operation was successful, to the shocking reality of seeing the damage to my son’s body, to the alternating hope and worry that comes with watching him struggle to recover, I am emotionally drained.

I am, however, the happiest I have been since we found out in February that Tyson had this serious heart condition. Since then, we’ve been trudging up a hill that we dreaded climbing, realizing the summit contained a surgery that put my child’s life at risk. Now that the surgery is over, I feel like we are coasting down the other side of the hill.

I was happier at 4 p.m. Monday than I was the day he was born. His birth day was filled with worry over whether he would need immediate surgery and whether he would survive. On Monday, after hearing positive news from Surgeon Roosevelt Bryant III, a gentle giant whose hands are as big as Tyson’s whole 8-pound body, I was walking on air.

Euphoric.

An hour later, I was sick to my stomach at seeing what looked like my son’s corpse in the Cardiac Intensive Care Unit.

Those are the highs and lows of the past 50 hours or so.  

If you are interested, I will try to quickly catch you up:

We arrived at the hospital at 6:30 a.m. Monday. Tyson was appropriately dressed in his Massillon Tigers outfit, ready to do battle. I also played Survivor’s Eye of the Tiger while they did some pre-surgery checks. (Hey, it worked for Rocky and it works – about 80 percent of the time – for my legendary high school football program, the Massillon Tigers.)

Yes, I was pulling out all the stops. This was serious. I needed my son to gear up for battle.

                                                                Tyson pre-surgery

Dr. Bryant stopped and spoke to us. This was my first chance to meet him. He’s about 6-foot-5 and solidly built, not skinny. I immediately pegged him as a defensive end on the football field.

He was alert and happy, despite it being so early. He spoke gently and confidently.

He seemed ready for this fight.

 

Handing Tyson off to the surgery team may have been the most difficult thing we’ve ever done. Not ashamed to admit I was crying. Truth be told, I wasn’t sure we’d get him back.

 

 

                                                          Saying Goodbye

After that, they ushered us into a private waiting room. They have one room they keep for the surgery that is the day’s longest and most serious. We won the prize on Monday and the reward was a fairly decent-sized room with comfortable chairs and a TV all to ourselves. I was thankful, because the main waiting room was filled with about 50 people.

We (Brooke, my mom and I) spent the time reading books and surfing the web. We didn’t even turn on the TV. I knew the Royals were welcoming a baby across the pond, but seriously, who the hell cares? Didn’t we fight a whole war so we wouldn’t have to worry about the British monarchy?

I was nervous, but I didn’t show it. I never show it. No use in getting others worked up with my anxiety.

They told us the surgery would be 4-6 hours, so we knew we were in for a long day. They did explain to us that at some point, when the surgery was completed, they would take us to a conference room and give us all the details. I told my wife that the whole conference room speech was a cover so we would think it routine and not panic as they shuffled us back to a private spot where they could deliver the ultimate bad news.

My mind is trained to consider the worse. I was convinced that if they took us to the conference room, they were going to tell me my son had died. I didn’t want to go to the conference room.

As the surgery progressed, they called us or met with us personally about every hour and a half to provide an update. All the updates were positive.

About 1:30, the nurse came in to tell us they were wrapping up and the surgeon would be in to see us shortly. She said everything went smoothly.

We were ecstatic. I can’t even describe in words the relief that went through that room.

An hour later, Dr. Bryant arrived. He explained the surgery was more challenging because Tyson is so small – they usually like to wait until the baby is double his size to perform this procedure, but Tyson was too sick and couldn’t wait. With the huge hands this guy has, I can only imagine how difficult it was working on my boy’s tiny heart.

But, he concluded, he felt everything went well and Tyson could avoid future surgeries. Ultimately, he could lead a normal life and even run marathons if he wanted.

(By the way, he delivered this news in the waiting room, not a conference room, kind of confirming my assumptions.)

I was so happy, I asked him to take a picture with my wife. You have to know me to know how out of character that is. I’m the kind of guy who could be eating dinner at the table next to Justin Timberlake and wouldn’t even say hello because I don’t like imposing on people. I don’t like to be bothered and I don’t like bothering other people, but this was a moment I had to capture.

 

 

                                              The Gentle Giant, Roosevelt Bryant III

They told us to wait about an hour as they got him all hooked up in the Cardiac Intensive Care Unit and they would call us up.

They did not call for a couple of hours, which, of course, made us wonder if something was wrong. But we were still so happy that when we did get the call, we rode the elevator grinning ear-to-ear.

Then, I saw a horrifying sight that turned my stomach. Tyson looked like a corpse.

He was lying on the table, pale and unsettlingly still. He was attached to a million wires. His eyes were open, but there was no life in them. They’d been coated with a glaze to keep them moist.

I almost turned around and walked out of the room. It was heartbreaking.

 

                                                        Our first glimpse

But somehow, they convinced us this was normal for this type of surgery and that he was actually doing ok. (I'm not so sure on that. I have a friend who works in a hospital and he said that was the most wires he has ever seen on a kid.)

We accepted them at their word and settled in for a bedside vigil that they tell us will probably last about 10 days, if all goes well.

And it seems to be going ok. He has not had problems with his heart, but he has been struggling with his lungs. He’s even had a collapse. Several times, he’s been clogged up and stopped breathing for a few seconds, leading them to “bag” him.

Scary stuff.

They hope this will stop once they take the breathing tube out, which they did this morning.  

Other than that, they tell us he is doing as well as can be expected.

The people at Cincinnati Children’s Hospital Medical Center are incredible. From Dr. Bryant, to Tyson’s cardiologist, Dr. Thomas Kimball, to every nurse, therapist and other medical professional we have encountered, this place is top notch. I know we had scheduling problems last week, but that is water under the bridge and every one I have encountered since 6:30 a.m. Monday morning has been tremendous.

We have a long way to go. Tyson will need to fully recover and that will take some time. He’ll likely return home with his feeding tube back in. He will still have regular cardiologist’s visits and other doctor visits. Because he is developmentally behind from doing nothing but struggling and sleeping the past 11 weeks, we will enroll him in therapy.

I’m eager to see what he is like with his mended heart. Life has been such a struggle so far.  Just sitting still, he would sweat like he was in a steam room. He got to the point where he wouldn’t eat because it was too much work.

In the days leading up to the surgery, he was either sleeping or crying. In fact, he would cry so hard for a couple of hours, he would exhaust himself and fall to sleep, only to wake up a couple hours later and repeat the cycle.

I’m eager to see his real disposition. I’m eager to see him happy and carefree.

I’m eager to meet my “real” son for the first time.

This I know: he is the toughest little 8-pound boy in the land.