Blessed -- In More Ways Than One

The second I saw Tyson post surgery, I knew things were going to be OK.

After his first surgery, when he was only 2 months old, our heightened anxiety turned to smiles as the surgeon explained how well things had gone. We were so happy, we took pictures with him to celebrate.

But when we arrived at Tyson’s room, the site of his broken body took my breath away. I stepped back out of the room to compose myself.

He actually looked dead to me. He was purple. His eyes rolled back into his head. He had a million wires connected to his abnormally still body.

So I prepared myself for a horror show as we took the elevator to the sixth floor last Friday to see our son after Dr. Roosevelt Bryant once again worked his magic on Tyson’s heart.

But the 2-year-old Tyson fared far better than the 2-month-old Tyson. This time, he looked more like his normal self, albeit with a 6-inch bandage holding his chest together and several wires monitoring his 25-pound body for post-surgical complications.

                                                                    First surgery vs. second surgery

Ecstatic is an understatement. We are amazed how well the surgery went and how quickly he rebounded.

I try not to make a bigger deal out of this than it is. I struggle with sharing fears of disasters that never materialize. I know other people have walked this path and still others walk more difficult journeys.

But damn, when it is your kid, it is your whole world. If you are ever going to make a big deal out of something – good or bad -- it is going to be your child.

So yes, there was, in fact,  a chance he wouldn’t make it through the surgery. Anytime you are being kept alive by a machine, things can go wrong. So, however small it might have been, there was a chance.

And, they’d told us there was a possibility – anywhere from 10 to 25 percent – that the surgery would screw with the electropaths of his heart and he would come out needing a permanent pacemaker.

But even at 25 percent, there was still a 75 percent chance he wouldn’t. So was I dwelling on the negative and too strongly communicating that to others?

After all, the surgeons at Cincinnati Children’s Hospital Medical Center do about 300 open-heart procedures a year. They do far fewer Double Outlet Right Ventricle repairs such as Tyson’s, but, still, they clearly have experience that makes these procedures almost routine.

I don’t know. Maybe we made too big a deal of it. All I can say is, when it is your child, you tend to dwell on the negatives. The percentages become a blur of what ifs.

When my wife and I handed my boy over to the surgical team last Friday, we were both in tears. Whatever the chance, if there is even one iota of a possibility that you will not see your child alive again, it is almost too much to bear.

But this is Cincinnati Children’s, the third best children’s hospital in the country. The surgical team, from our gentle-giant surgeon, Dr. Bryant, to his assistant, Dr. Katherine Walters, to the anesthesiologists and the rest, worked a small miracle in our little boy.

An expected six-hour surgery became only four hours. Once they opened him up, they saw there was no need to fix Tyson’s original patch. The work Dr. Bryant had performed two years ago was still solid. They needed to only dissect some membrane and muscle and re-route a pathway to reduce pressure and even out blood flow.

This reduced recovery time. They were practically pushing us out the door before he was off the operating table. They talked of getting him up and moving the day after surgery. They were aggressive in discussing going home, despite our protests. We were concerned about his pain and elevated heart rate. He wasn’t eating or drinking. He was barely talking. He seemed angry at us, or depressed.

They were certain he would do better at home.

Turns out, they were right. One day after getting home, Tyson appeared to be his normal self. He is not sleeping well, still has some pain and is moving a lot slower, but he appears well on the way to recovery. In fact, we are already concerned about how we will keep him from running and roughhousing for the next six weeks as his chest heals.

For now, he will have regular visits to his cardiologist, Dr. Thomas Kimball, until we know he is fully recovered from the surgery. Then, we will get back into the routine of cardiac visits every six months to monitor his heart, each time hoping we don’t get told he will need another surgery.

                                                                             Dr. Roosevelt Bryant

Tyson is the kind of kid who, if someone gave him a balloon to play with, he would ask for one for his sister. He is an incredibly kind-hearted and quiet boy who is methodical and contemplative. He quietly plays with puzzles for hours. He has fun taking things out of a basket, arranging them, counting them and then putting them back.

He is meek. But his demeanor hides a ferociousness. I saw a nurse come in and take a blood sample from him. He never flinched, despite the fact she had to move the needle around to get enough blood.

During the whole pre-op, surgery and post-op, I saw him cry only on one day, the day after surgery. He was in a lot of pain and several times during the day, he whimpered. Through all of the rest, he was stoic.

As my favorite shirt of his says, "SOME DAY, I AM GOING TO MOVE MOUNTAINS." He will. He might even become a heart surgeon.

Some day, we are going to tell him about all the support he had going into that operating room.  We are collecting the pictures and messages and thoughts and prayers so he can some day know how many people had his back.

Those messages, thoughts, prayers and karma you sent our way over the last few weeks were like a wave carrying us through.  

Brooke’s co-workers made and sold shirts on Tyson’s behalf. Mine took a staff picture dressed in red in support. A fellow Heart Mom who sadly lost her child a few weeks after his first birthday brought us lunch in the waiting room as we anxiously yearned for some positive news on Tyson. The good friend who married us brought dinner that night. Others cooked for us when we got home. One friend of Brooke’s made us a couple weeks’ worth of dinners!

Both of our mothers came to town for weeks to help as needed. My daughter’s pre-school class made cards for Tyson, and the sixth-grade class at Brooke’s school each wrote personal messages of support to her. Some made you laugh out loud. Others made you cry at how caring and sensitive kids can be.  

And, the social media! It helped that Tyson's surgery got postponed to, of all things, Congenital Heart Defect Week. It provided the opportunity to spread even more awareness. "I'm a Tyson Supporter" symbols were everywhere, as were dozens of pictures of people wearing supporter shirts. Our story was being shared with lists of people we didn't know and then we began hearing from complete strangers who wished us well and told us they were in our corner.

If it is possible to feel both all alone and that you have an army of support behind you, that is where we found ourselves last Friday morning when we did that incredibly difficult hand off.

The byproduct of perhaps worrying too much, of maybe dwelling on the negatives and what ifs in too many conversations, of telling our story to too many people, was that a legion of support formed around us.

I’ll take that.  Every day.