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.         

Surgery Set

                                                          Tyson in a good moment!


Cincinnati Children's Hospital Medical Center has moved up Tyson's open-heart surgery. He is now set for Monday morning.

The bad news is he is showing signs of heart failure and his growth has fallen off the charts. They call it "failure to thrive."

The good news is the surgeon is confident he can fix my boy and get him on a better path.

For all my belly aching about appointment changes, when I did talk to him, he was very nice, professional and assuring. He said he has done several of these types of surgeries and he feels like this will be a success.

Dr. Roosevelt Bryant is new to Cincinnati. He was recruited here out of Minneapolis. He has a great resume, so I am hopeful. My boy's life is in his hands.

The surgery will be 5 to 6 hours with Tyson on a heart-lung machine for about half of that. Recovery will be a week or two, if everything goes well. Follow up surgeries are possible, but he said not a definite.

He'll likely still be on the high-calorie formula and fed through a tube for awhile. I am going to talk that over with the nutritionist. They need to understand this food is really tearing up his belly and making him uncontrollably cranky.

But, of course, we will do whatever necessary to get him healthy.

I'll try to post some things on Facebook as Monday progresses. If you think about it that day, send a good thought Tyson's way.

  

Cupcakes 24-7

 

 

 

Do you ever see habits developing in your child and wonder where they come from and whether they will continue?

My daughter is not even 2 years old and she already has a sweet tooth. Can a person be born with a sweet tooth? Is it biological? Blonde hair, blue eyes and an addiction to chocolate?

Is it inherited? I don’t eat a lot of sweets, but I am pretty sure my wife would put chocolate dressing on her salad if it existed.

My daughter’s main passion right now is cupcakes. If you have read this blog, you know she is a night owl who does not sleep if she can avoid it. One night last week, after we put her to bed, she sat in her bed and talked to herself for about an hour. She does this often. Thank God for the baby monitor. Some of my greatest joys come from listening to her conversations with herself before she goes to sleep and after she wakes. I can’t make out everything she says, but what I do understand gives me great insight into what is running through her little mind.

On this particular evening, it was cupcakes. For more than an hour, I listened to her say the word “cupcake” repeatedly. Sometimes it was simply, “cupcake?” like she was asking a question.   Other times, it was a demand: “CUPCAKE!” Still other times there was a little whine to it…”cuuuuupcaaaaaake.”

What became clear between maybe the seventh time and the 49^th time she said the word was that the girl wanted a cupcake.

Now I’m no father of the year, but I know better than to put a cupcake in the crib at 11 p.m. But her intensity did make me wonder, did she get enough to eat that day?

My philosophy on feeding is that kids will eat when they are hungry. If they don’t eat, they aren’t hungry. It is kind of basic instinct. Stick a decent meal in front of them. If they eat, beautiful. If not, heat it up for breakfast the next morning.

But as I listened to my daughter whine in hunger, I wondered if I had failed to feed her enough that day. Our son was in the hospital and my wife was staying with him, so daddy was in charge. Had he flunked a basic daddy duty?

So I tiptoed to her door, cracked it open and whispered “Sydney, would you like a hot dog?”

“NO! CUPCAKE!” She said this with the force of Al Pacino’s HOO-AHs in Scent of a Woman.

Relieved, I realized she wasn’t hungry, she just wanted to satisfy her sweet tooth. We face this struggle every day. She’ll take a couple of cursory bites of her meal, pronounce that she is “ALL DONE” – or worse, throw her plate on the floor – and then 15 minutes later ask for a cookie. Or a cupcake. Or ice cream.

You’d think we give our child a lot of sweets. I promise you, we don’t. She gets a couple of fig newtons a day and a miniature cupcake every other day or so. She gets ice cream on special occasions.

Is this a lot?

She drinks only water and milk. None of those sugary drinks that can kill you by age 5. We don’t even give her juice. We recently introduced chocolate pudding, but it was sugar-free.

She’s frenetic enough naturally. I’m not about to subject myself to a sugar frenzy. My house would be Romper Room on crack.

Where does she get this and will it continue? Can I play a part and stop it? Should I stop giving sweets altogether? Or is it harmless? I don’t know too many adult women who are not sweet addicts, so maybe it is a natural gender thing that cannot be denied.

If that is her only addiction, she’ll be fine, right? Dad shouldn’t be such a doomsayer.

But that is what I do. The other day I got a bit of a scare when I projected a current behavior into the future. She has taken to carrying my toothpaste around with her. I have no idea why this is the object of her fascination, but anytime she gets within a couple feet of my bathroom, she grabs the toothpaste, sans cap.

She then proceeds to march around the house with it in her hand. She hasn’t quite figured out that she can squeeze it hard and send it flying all over the kitchen cabinets, but she does like to periodically lick the top of the tube to get a little toothpaste in her mouth.

I imagine she does this because the minty taste makes her tongue tingle. But then I thought, what if this gives her some type of high? Is she training herself to get an instantaneous jolt from a foreign substance? Is this only a step away from huffing?

Then I smacked myself in the head and said, “She’s a FREAKING KID who likes toothpaste. RELAX.”

I realize how ridiculous it is. But my job is to protect her and guide her to a happy life. I take that seriously, whether I am heading off a meth addiction, ensuring she doesn’t balloon to 500 pounds on an all-cupcake diet or hiding the toothpaste so she doesn’t become the only child in her school with a mint addiction.

(After writing that last sentence, I Googled “mint addiction.” It really does exist!!! Listen to what this guy says: “It gives a distinct sensation in your mouth which makes it addicting more in the way that marijuana is addictive, rather in the way that alcohol is. The sugar intake you are experiencing is why you are suffering from postural hypotension. The high levels of sugar, at first, most likely gave you energy. Now your body has probably adapted to the volume of sugar and expects to receive that amount and/or more.” HOLY COW! The toothpaste is going out of reach in the medicine cabinet.)

So allow me to be a little paranoid. It’s my job. I will study my daughter like a science book, trying to determine where her little nuances and proclivities come from, whether or not they could turn into bad habits down the road and how I might nip them in the bud without sending her into one of her Terrible Two tirades.

If that sounds like a lot of work, it is. I’m going to need a jolt of energy. Anyone have a cupcake?

A Big Thank You to Everyone

Tyson’s surgery has been set for July 25.

I hope he can make it.

We meet with the surgeon Wednesday and I might push them to move it up. He’s getting worse. Fluid is building in his lungs and it is very hard for him to breathe. The high-calorie formula they have him on is really upsetting his stomach and he throws up a lot and is in constant pain.

We just aren’t skilled enough to know if this is heart failure or just some other struggle. What I do know is he is worse off than he’s been since he came home.

This whole thing has me severely depressed.  

That’s not somewhere I want to be for very long.

My wife and I are blessed. We remind each other of that often. Mom, dad, daughter, son. Perfect family.

We have jobs that pay us well. We have a roof over our head and food on our table. Rarely do we have to say no if we want something.

Our life is good.

But we have really realized our blessings over the past few months as family and friends have rallied to our side. The love and support that has circled us has been amazing.

So we would like to say thank you. We can’t name everyone, but please know that all of you are captured in this post in some way.

Our families have been awesome. My brother, Rich, has made it financially possible for my mother to quit work and be down here when needed. She has probably been down here half of Tyson’s short life. Any time we need her, she hops in her car. She’s always been my rock.

Brooke’s mom and dad came for the birth and her mom took extra time off work to stay through his initial hospital stay and help us. They also are caring for our more rambunctious dog, Murphy. It is wonderful to have their support.

My sister, Brooke’s brother, our cousins, aunts, uncles, grandparents and more have called, written, sent gifts and cards in support of Tyson. We love you all.  

Friends have stepped up, too. Libby Hilton has been simply amazing, becoming our emergency babysitter whenever we need it. We don’t have family in this area, so, whenever an emergency arises – such as a trip to the emergency room -- we wonder whom to turn to. Libby is always quick to answer the call.

Amber Dockery, our child care provider, has been extremely flexible with Sydney and helped feed us when we were too tired to cook. She even rallied some of the other good-hearted parents to our aid with a wonderful gift basket. One parent, Shannon Grote, made us enough chicken tortilla soup for a week!

My friend Fred Reeder, who united Brooke and I in holy matrimony, has continuously offered assistance, and his wife, Jennie, made us a couple great meals that helped us through a trying week. These two have always been a tremendous support to us and are good at getting our minds off of things for awhile.

Nina McEwan, one of my wife’s good friends, has been a shoulder for Brooke to lean on and has signed us up for some sort of food exchange. I don’t really understand it, but apparently we’re getting free meals. I like meals and I like free.

We’ve had friends from Children’s Hospital – Tanya Leach, Jim Feuer, Tim Bonfield – reach out with offers to educate us on doctors and procedures, as well as make our time there more pleasant.

Some have helped without even knowing. Amanda Schwieterman, Paul Fresty, Vicky Snyder, Dan Criss, Meredith Bollini – they’ve all walked in our shoes and their children are thriving. Those examples keep our spirits up.  Brooke’s friend Kim Roeller even had her friend, Lee Larson, an adult who was born with heart defects, reach out to us and his words were encouraging.

Countless other people have made offers to help, especially to care for Sydney. The girl would have 100 new friends if we ever took them up on their offers. I can’t name all of you here, but know we really appreciate your kind hearts.

Hundreds – and I mean hundreds – of others have offered support through prayers, positive thoughts, gifts, cards, phone calls, Facebook posts and other forms. Again, I can’t name them all, but I have no doubt Tyson is doing as well as he is because of all the positive energy being sent his way.

We still have a long way to go, but we feel like we have an army behind us.

Thank you.    

Hoping Surgery is the Cure

 

 

Tyson is headed for surgery.

He’s not getting better and we’ve reached the point of last resort.

When his weekly cardiac check up showed no weight gain, the cardiologist looked at Brooke and said, “I think it is time to talk about surgery.”

Damn.

They’re presenting his case to the cardiac team on Tuesday and we should have something scheduled soon thereafter.

This is not the surgery to place a band on his artery and equalize blood flow. This is surgery to reconstruct his heart and fix his Double Outlet Right Ventricle, along with the other defects.

This is the operation he was to have at about six months, when he would be bigger and stronger. Doctors have determined his heart is working too hard and he won’t get bigger and stronger. Despite a high-calorie diet that calls for him to be force fed through a tube every three hours, he is not gaining weight.

The open-heart surgery, risky already, is riskier the smaller he is. We certainly hoped for him to gain weight so he would be in a better position to withstand the trauma.

That’s not to be.

Damn.

I’m depressed. This is not what I wanted for my son. I wanted him to have as much chance as possible and that meant delaying the surgery.

This is my little boy. This is life or death.  

But, I am a little relieved, too. Tyson has a miserable life. He struggles to eat, breathe and even stay awake. He pukes at least once and, most often, twice a day. If he’s not sleeping, he often is in some discomfort and pain.

Successful surgery could turn his life around.

I’m hoping for positive outcomes like this one: http://www.youtube.com/watch?feature=player_embedded&v=ersBIAjHM-w

That’s pretty amazing stuff. The shots of the open-heart surgery are incredible. It is pretty remarkable how close this family’s circumstances mirror ours, and the baby’s condition is similar to Tyson’s.

I pray we have the same results.

If you want to know specifically about Tyson’s condition, here are details from an earlier post: http://firsttimedadat45.blogspot.com/2013/03/talking-specifics-about-my-boys-heart.html

There will be a long road to recovery even if the surgery goes well, including the prospect of more operations and the weekly cardiac visits. I don’t know when he’ll hit the “normal” stage.

But that is where we ache for him to be. I have had trouble truly bonding with Tyson because his condition has made him constantly miserable and I’ve become so frustrated at my inability to do anything that makes him feel better.

I love this kid. I want life to be easier for him. I want to see him really smile for the first time.

One doctor told us he will be “a totally different baby” after the surgery.

Amen.

Sydney and Kanye: Two Peas in a Pod?

If it is sacrilegious to admit your children annoy you, then let the shouts of “Satan!” come my way.

I love my daughter more than anything on earth, but this new “Terrible Twos” phase she is apparently hitting early is putting her just a notch below Kanye West on the annoyance meter.

Here are a few things Sydney has taken to doing that I am certain are designed to entice me into child abuse and get me sent away so she can spend her days eating nothing but cupcakes:

Spitting out her food. Somehow, she has come to believe that if she is eating something and decides – mid-chew, mind you -- she doesn’t want it, she can simply spit it out. This could be in her high chair, or while she walks around the house.

This is obviously unacceptable. And I have told her so. Loudly. Over and over.

The other day she took a couple bites of an apple, slowly opened her mouth and nonchalantly let the contents drop to the floor.

My wife’s response to this was, “Well, you know, she doesn’t like the skin.”

“Oh, OK, I guess we’ll let her turn our living room into an apple orchard because she doesn’t like the skin. She doesn’t like being confined to our yard either, so maybe we should let her take her toys to the middle of the street and play.”

Chirp. Chirp.

That’s the sounds of crickets. Sarcasm doesn’t go over well in my house when the wife is the target.

Believe me, I am going to break Sydney of this habit or I will end up in the graveyard of failed parents, alongside Dina and Michael Lohan and whomever parented Amanda Bynes. Throw in those teen moms from MTV, too. We’ll have a hell of a party.  

The only saving grace on this one is we have dogs that follow her around and scoop up her remnants shortly after they hit the floor. They stalk her as a tiger does its prey. I think sometimes she does it just to see the dogs eat it.

Is my child the only one who does this?

Throwing her plate of food on the floor. For a while, we had her “trained” to say “all done” when she felt she had eaten enough. She’d often say this with great exuberance, “All Done!” and that was our cue to immediately clear her plate and get her out of the chair.

Now, she seems to have eschewed our agreed-upon signal for the distressing act of dumping her food on the floor. Where does one learn this? If you know me and my rather large physique, you know very little food ever gets dumped off my plate, so this cannot be something she is learning at home.

Again, thank God for the dogs. I never have to worry about carpet stains because they are on those stray morsels faster than Kim Kardashian scurrying to her next red carpet interview.

Nevertheless, this brazen act is similar to spitting out her food and does not go unpunished.

But I am just not sure a 22-month-old mind yet comprehends the whole concept of “right and wrong.” I’ll keep trying, because, at some point, either she’ll get it or my heart will explode in frustration and I’ll fade blissfully from this earth to a place where all children happily eat all the food on their plates – including their vegetables -- carry them to the sink on their own and hand wash them to spotlessness.

Totally ignoring me. The other day, I asked Sydney 15 times to look at me so I could show her something. She was playing no further than five feet away. Somehow, she managed to keep her back turned through all 15 pleadings.

This is a remarkable skill, when you think about it. This single-mindedness and ability to block out the world around you might lead to great things. I imagine this is how Stephen Hawking is when he is working on some serious physicist stuff.

It is also a growing trend. She regularly has a very nonchalant attitude when it comes to taking directions from others. Perhaps she is practicing for her teen years.

I can’t wait for those golden years when she essentially serves as dad’s gopher, fetching a newspaper or beer, or picking up things his 50-year-old body refuses to bend for. I still remember when I was about 8 and playing outside with my friends, hearing my dad call “Brian!” several times and running inside to see what he needed.

“Can you change the channel for me?” he asked. (This was before the days of remote control.)

Ahh, the rites of fatherhood. When do I get there with Sydney?

Until then, I’ll continue to repeat simple commands like, “It is time for bed, let’s go upstairs” and she’ll continue to stack her Legos, like daddy’s voice is a dog whistle her ears are not attuned to.

So those are my top three complaints as of now. It is important to note that this is a fluid process, and as we conquer one annoying habit, another soon pops up. If you ask me six months from now, this list will be different and, perhaps, quite longer.

Now, I could also do a post on all of the things that I adore about my daughter, from her recitation of the ABCs in order to get everyone to clap for her; to her getting excited and shouting a 25-word diatribe, of which only about five are actual words you can understand; to the ultimate daddy-loving symbol of affection, the “Daddy! Daddy! Daddy!” I get when she runs into my arms upon my arrival from work.

But that would bore you. Or seem like bragging. Or paint me as a nice guy.

Call me a guy who likes to go against the grain. Even if it is sacrilegious to the shrine of parenting.