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.

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.

Baby, Don't Hurt Me; Don't Hurt Me, No More

 

 I am pretty sure I am raising a hypochondriac.

If I had a dollar for every time my daughter said “My eyes hurt!” or “My knee hurts!” I could buy Cincinnati Children’s Hospital Medical Center, which already has a wing dedicated to my children after getting about half a million dollars of my insurance money over the past nine months.

Parents, please tell me if this is normal for a 2 year old?

Of course, you first worry that she really is hurt. But after awhile, you realize no human being on earth can be hurt in the elbow, knee, eyes, foot, belly, ear, beard (her word for cheeks), finger, toe and every other body part as frequently as she is. And, when you ask her what hurts and she replies “finger” one second and five seconds later says “knee,” it is kind of a giveaway that she might not be telling the truth.

So then I theorized it was about attention. She has been surrounded with sickness and hospitalizations over the past nine months, between my son’s birth and heart surgery and my mother’s stomach surgeries. Maybe she sees all the attention they received and wants in on the action? Plus, she’s had her own legitimate sicknesses and those have paid off with extra attention.

But Lord knows this chick is already Queen of the Ball. She couldn’t get more adoration from her parents, and whenever she visits with relatives or friends, she’s usually the center of attention.

We have recently noticed that some of these “hurts” come up when she is scolded. She begins to cry – real tears -- and says “Daddy, my knee hurts.” We’ve come to realize that it is her feelings that are hurt, but she does not have a way of expressing it. So, we are trying to teach her about “feelings.”

That’s like trying to teach geometry to Jessica Simpson. She is having a really hard time grasping it and often still reverts to the “my eyes hurt” line.

The key for me is to determine what is real and what is fake. As you can imagine, I am a pushover for those tears. I’m a puddle of jello.

I try to hold out. The other night, she was crying in her bed, yelling about her leg being hurt, and I thought it was another attention-seeking episode. I let her go on and on. As the cries got more urgent, I grew frustrated and finally went in to say “enough.”

That’s when I found her right leg legitimately caught in between the slats of her crib, obviously causing her great pain.

Ahh….yeah. Nice move, daddy. It isn’t really Woody Allen material, but a move like that will surely keep me out of the Daddy Hall of Fame. My heart ached on that one.

I think where this type of thing is concerned, it is always best to check first and ignore later.

I hope this phase does not last long. If it does, then she either legitimately has pain, which is obviously not a good thing, or she is a hypochondriac, which means I’m in for a long 18 years and another wing at Children’s Hospital.  

Some Families Run a Never-Ending Race

We had a fix.

That is what I kept thinking as I walked the halls of Children’s Hospital and saw so many kids whose conditions are permanent. Kids who will never walk again, or live their lives on ventilators, or spend only a few more months with us before their short lives are snuffed out by a terminal disease.

I have great empathy for their parents. I’m in their stadium, but not in their race. I ran a sprint. These parents are running a marathon that never ends.

I don’t know if I have the strength to put on their shoes.

If they had my option – to gamble on a risky surgery that could provide a permanent “fix” for their child – they’d take it with tears of joy in their eyes.

Life has been a struggle for Brooke and I the past few months. In and out of the hospital. Relying on others. Unable to settle into the routine of normal family life. Huge hospital bills. Frustration over lack of progress.

Most of all, we’ve hated watching our little boy struggle. We see friends with happy babies reaching milestones Tyson should be achieving, yet he is far behind.

But we had a fix. We knew this surgery was coming and we knew, if successful, it would put us on a path to normalcy.

We are not 100 percent sure we are there, but we are in a better place than we were a week or two ago.

That is not the case for many of the parents I saw walking the halls of Cincinnati Children’s Hospital Medical Center. They don’t have a fix. Their life will never get back to normal.

I walked into the lobby of the cardiology unit the other day and saw a priest comforting a family of seven. I don’t know what happened, but, of course, I do.

When I walked to the parking garage, even at 11 p.m. at night, I saw people sitting in their cars or even on their open truck beds, eating, drinking, listening to music. Who hangs out in parking garages? Family members of children who have come to the hospital from outside of Cincinnati – Morgantown, W. Va., or Evansville, Ind., or Frankfort, Ky. People who need to be here for their child, but don’t have a local option or the cash to spring for a place to stay. They live out of their child’s hospital room and that few minutes they have in the parking garage is a respite from the challenges of loving and caring for a struggling child.

A few minutes of solace.

My wife sees this all the time. She is a special education teacher who takes care of children with disabilities. She’s had children in wheel chairs, children on ventilators, children who don’t speak or hear or comprehend. She’s had children whose problems are simply insurmountable, yet their parents chug along each and every day, trying to do their best at establishing a normal routine.

These parents are super heroes.  

I’ve never been an activist. As a journalist, I tried to use my skill as a writer to shed light or right wrongs or even change a small corner of the world. Up until recently, I worked in a field designed to help people – my little way of doing something to make a difference.

But I’ve never been big on volunteering or joining causes or doing this walk or that fundraiser. Group activities like that are just not in my nature, and I doubt that will change.

But seeing these children and their parents breaks my heart. Every day for them is Groundhog Day, the same bad news over and over.

I don’t know how they do it. I feel like I should do something to help.

Many people have rallied to our side during our ordeal with Tyson. People from all over the country – even the world – have voiced their support.

Thank you. Every prayer and good thought you have sent our way has helped. My wife and I are amazed at the support we have received and we wish we could throw a party for all of you.

But our sprint is hopefully ending. We had a fix. If we are lucky, we are moving on to a new phase in our life.

If I could ask one thing of those who are reading this, it would be to visit the Children’s Hospital nearest you. Ask how you might help. Or reach out to that family you know who struggles every day taking care of a child with a disability or terminal disease. Offer to give them a break. Make them a dinner. Buy them a gift card.

Say a thank you to the heroes who work at these places and take care of these children every day. Emotionally, it has to be tough.

I’m much more aware of this now. I don’t think I will ever be an activist, but I do think I will pick and choose the spots where I help. The Ronald McDonald House will go on the list of charities I annually cut checks to. So will Cincinnati Children’s.

I need to do more to help, and, while I don’t want to be preachy or melodramatic, if you have a decent life, so do you.

Because some families will never have a fix.

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.

  

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.

Back to the Hospital

Tyson is back in the hospital.

He’s really struggling.

They’re inserting a feeding tube in hopes of pushing more calories into him so he gains weight. Gaining weight is crucial. He has to gain weight and get stronger for a heart operation scheduled at around six months. If he does not gain weight, he faces a heart operation now just to get him to a point where his heart doesn’t work so hard, thereby making it easier to eat and allowing him to gain weight and get stronger for that second operation.

He’ll spend a few days in the hospital on the feeding tube and IV medicine. They will teach us how to work with the tube, which will be in him 24/7. If he gains weight in the next few days,  they’ll let him come home and we will be responsible for feeding and administering the tube should it become dislodged.

He’ll likely have the tube in until his operation – whether the first one becomes necessary or we make it to the second one.

If he does not gain weight in the next few days, he’ll probably go straight to the operation.

Heart Heart-breaking.

We had such high hopes when we were able to bring him home early – we felt like he was going to breeze through this battle. Far from it.  

He had a healthy appetite when he first came home, but he has gone downhill since then. We’ve determined he has acid reflux, which is leading to colic. This results in what seems like perpetual pain, especially between the hours of 9 p.m. and midnight. By the end of the day, you can literally hear the reflux starting in his stomach and making its way northward.

This is not uncommon in babies, but it is more common and more severe in babies with heart defects.

This poor boy’s life has been really, really tough so far. From needles and monitors in the NICU to constant stomach pain at home; he has had nothing but challenges. And the worst is yet to come.

I’m starting to lose my cool and get depressed all at the same time. The kid doesn’t deserve this bullshit.

I feel guilty because I sometimes get angry. He requires much attention and work. He constantly needs held and repeatedly repositioned because he can’t stay comfortable in one spot very long. He moves very similarly to a worm on a fish hook, desperately trying to find a spot where he can be comfortable. He cries and grunts throughout the day.

I don’t know if it is anger. Maybe it is just frustration. Or exhaustion. But my shortness with him is not right. He can’t help it.

He’s up into the night because being on his back is painful. They tell you when your child has reflux, keep them as upright as possible. My wife has taken to sleeping with him lying on her belly because that is more comfortable for him.

She’s a saint. Up with him all night and then dealing with Tyson and rambunctious Sydney all day.  Without a doubt, I hit the wife lottery and Sydney and Tyson hit the mom lottery.

Unfortunately, her love can’t work magic. The next few days are crucial. As repulsive to me as it is to have my son living with a feeding tube, I DO NOT want that surgery.

I’ll keep you updated when we know more.