Wednesday, July 24, 2013

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.         

3 comments:

  1. Thank you for sharing! The only thing I can say to you and yours after reading it is God bless you....!

    ReplyDelete
  2. You are all in my thoughts and prayers I pray for Tysons' healing and continued progress, lots of love and huggssss

    ReplyDelete