Blowing Through the Caution Signs

 

 



 

I have some good news, some moderate news and some bad news.

The good news is Tyson came home last night. This kid has blown through every precaution sign the doctors put in front of him. To think we went from “he will definitely need this first operation” to “he doesn’t need the operation and can go home today” in less than two weeks is amazing.

The docs felt he was at greater risk of catching some hospital-related disease the longer he stuck around the hospital, so they sent him home after only two days in the step-down unit. They had expected him to be there until next Tuesday. Heck, they had expected him to be in the CICU a lot longer, too.

The boy is tough.

And he saved me a night or two of sleeping at the hospital. They want you to spend 24-7 with them when they are in the step-down unit to prepare for when they come home. So, we had a plan that the grandmas, mom and dad would spend nights at the hospital. My wife already had the days covered and I took over after work until about 8.

The grandmas handled the first few nights. Because I have to work, I was going to take the weekends. My back was screaming in anticipation. I’m already as stiff as frozen leather from just sitting in the chair the few hours a day I am there. Sleeping there would have been painful.

I once spent a weekend in Atlanta where I walked a few miles to one of those all-day festival concerts. I then spent the day standing and listening to music. My back got so stiff and painful it wasn’t right for four months. It only loosened up after I had wisdom tooth surgery and they put me under. I’m fairly certain I would not have been able to walk after a weekend in the step-down unit.

So we have our little boy home. He is as strong as an ox and hopefully ready to grow over the next six months so he is ready for his big operation.

Now the fun begins. We get to see how Sydney reacts to a little brother. She mostly ignored him in her two visits to the hospital and again last night. I can see her trying to push him out the back door when we aren’t looking. I would not put it past her to pull an Amanda Bynes and just go off the deep end. She is used to getting all the attention.

We also get to see how the dog reacts. I say dog, because, if you remember my earlier post, Brooke has elected to send her rambunctious Murphy off for the summer. Vegas will likely take the Sydney approach and ignore him. Just another interloper stealing away daddy’s attention.

And we get to see dad get back in the groove of taking care of a tiny baby.

Basically, I suck.

In the hospital, I must have let his head fall a half-dozen times. I could never get him to be comfortable or to eat a lot. He peed on me when I changed his diaper.

I was a mess. And he knew it. I think I felt him cringe every time I was in charge. His eyes were begging the nurses not to leave him alone with me.  

I wish I could fast forward six months. I am much better when they are a little older and tougher. Right now, I’m just afraid of accidentally doing something that results in his death. Remember, I am the guy who let Sydney fall off the bed because I was engrossed in paying bills.

I’d be lost without the wife. Today, I woke up to find her sleeping with Tyson on her chest. She can even multi-task sleep. They looked so right together. If that were me, I would never be able to sleep with him on my chest and, if by some miracle I did, I would certainly somehow drop him off the bed.

To add to my apprehension, here’s my moderate news: they have told us that his heart will eventually FAIL.

Yes, his heart is not going to make it. We knew that, but I thought it would surely make it until the big operation.

Not necessarily so.

We have been given signs of heart failure to look for. If we see it, we get him to the hospital. They will then do the first operation they were hoping to avoid.

At least we will have a few days to figure it out. They say this is not a situation where we have to get him to the emergency room immediately. But we need to be on the lookout and not let it progress too much.

How am I going to know if he is having heart failure or just being a normal baby? If he turns red and cries, is he just grunting out a poop or having a heart attack??? Good Lord, no one should trust me with this kind of decision. I’m not exactly the most observant person in the world. If I had been that guy in Cleveland who noticed that kidnapped girl trying to break down that door to escape, she’d likely be there another 10 years because I wouldn’t have looked up from my lunch long enough to notice.

By the way, Charles Ramsey, tip of the cap to you. Enjoy your burgers.

The final bit of news is the bad news.

Because of his heart condition, Tyson had increased chance of genetic issues. They did a full genetic test on him and found he is missing part of Chromosome 9.

They are not really sure how this will manifest itself. It is not as easy as the chromosome issues that lead to Down’s Sydrome or even worse fates. This one is really dependent on how much of the chromosome and where it is at.

Heck, they are not even sure it is a problem. They are testing Brooke and I to see if we have the same thing. Because this is rare and very few people in this world have full genetic makeups done on themselves, it is possible there are tens of millions walking around with the same issue and it does not affect them at all.

But we do know that some of the kids with Chromosome 9 issues do have problems, such as Kleefstra Syndrome.  This results in developmental/learning delays, low muscle tone, recognizable facial features and other things commonly associated with genetic disorders.

I know we have had really good luck so far with Tyson and his condition, and this may be pushing it, but I am confident my boy is going to be ok. He has just blown us away with his resiliency and ability to overcome. I am extremely hopeful this is a spin of the wheel that will not land on his number.  

But if he is afflicted, so be it. There aren’t too many families as equipped as mine to handle it. My wife is a special education teacher who has a heart of gold. I’m a daddy who is going to be there for his son no matter what. We earn a fairly decent income to get him the things he needs.

I’m far more worried about him surviving major heart surgery than I am raising a child with disabilities.

I just want him around.

Tyson is Tougher than the Toilet Paper

The food solution the hospital is feeding Tyson costs $1,200 a day.

Yes, you read that right.

Now, I could scream that the manufacturer is doing the typical thing every medical supplier does and is raking in outrageous profits. Or, I could loudly lament how the hospital is marking it up a ridiculous amount to get its huge profit from the insurance company.

Instead, I am only going to say four words: thank God for Anthem.

I am a notorious hater of insurance companies. Have been since I was 24 and my insurance company dropped me after three accidents in a span of a couple years. All the accidents were someone else's fault. Excuse me, but I thought that was the definition of insurance? It is there when you need it.

My hatred has only grown deeper over the years as I have seen people with cancer or other serious diseases dropped from coverage while watching insurance companies rake in HUNDREDS OF BILLIONS in profits in a SINGLE year.

But today, I am only happy to be insured. They are there when I need them. In the best-case scenario, it looks like my son's first stay in the hospital will be at least three weeks in the Cardiac Intensive Care Unit. If he ends up needing that first operation, it will be worse. Then, he has a pretty major operation about six months from now.

Can you say half a million? Let's say he spends a total of 60 days in at an average cost of $5,000 a day (the going rate?). That's $300,000 right there. Throw in a couple surgeries by one of the best pediatric health surgeons in the world and you're looking at half a mill.

Thank God for Anthem.

What if I worked at Wal-Mart? Or Papa Johns? Or one of the hundreds of thousands of businesses in this nation that doesn't agree to split the cost of group (ie cheaper, because you buy it in bulk) health care with its employees?

I'd be up poop creek without a paddle. All because I didn't have my crap together coming out of high school and skipped college (or couldn't afford it), instead choosing to go to work for one of the largest corporations in America and maybe work my way up the ladder.

Thank God for health care insurance. I'll pay my deductible -- not an easy task in itself -- and go on with my life. I can't help but feel empathy for others who may be in this situation but not have the same peace of mind.

By the way, everything in this hospital is top-notch. Every doctor and nurse so far has had tremendous knowledge and bedside manner. The equipment is state-of-the-art. The facility is modern and clean. Even the cleaning folks stop and talk to you and ask how the boy is doing. It is easy to see why this is rated the third best Children's Hospital in the nation. I LOVE Cincinnati Children's Hospital Medical Center.

But about the toilet paper.

I used to work for the county, and in an attempt to save money, administrators made a decision to go to cheaper toilet paper. It is the kind that tears as you are rolling it off the spool. It disintegrates in your hand and you have to use three times as much just to ensure a good wipe. Not sure how that saves money.

When I got a new job, one of my greatest joys was saying goodbye to that toilet tissue.

Not so fast. It has returned to haunt me at Children's. I'm spending many hours bedside in the CICU. That requires an occasional trip to the bathroom. This top-notch facility in every way is letting me down on those occasions.

I have a few friends who work here. I can only hope the administration has higher quality toilet tissue.

For those who dialed in for a Tyson update and not a speech on health insurance or toilet paper, he is holding his own. They are now feeding him and are going to take a few weeks to determine if he can live with the narrowing in his aorta, since it is not as bad as they once thought. Basically, it has to be wide enough to ensure blood is distributed equally between his body and lungs. If that happens, he can go home and they will make any necessary repairs when they do the big surgery in 6-8 months.

If his body cannot handle it, they will either go in and surgically repair the narrowing or they will place a band on another part of his heart that will apply a corresponding equal restriction, thereby equalizing blood flow.

The bottom line is the kid has fought his way to best-case scenario so far. I can't begin to explain how that feels. Doctors are very happy with his progress. 

He still has a big hill to climb. I am not getting over joyed on this -- he still will have open-heart surgery where they will literally change the anatomy of his heart with a scalpel and other material. That's scary. 

But he has proven to be strong and a fighter in every way. That gives me great hope that he shall overcome. 

Thanks for all the prayers and good thoughts. 

They are working. 

Hurry Up and Wait

My son is being kept alive by a medicine called prostaglandin.

Today, they turn the medicine off.

If this experiment works, he may be able to avoid the surgery he was expected to undergo this week. If it does not work, he will get blood in his lungs and have a really difficult time breathing. Doctors will reverse their decision and he'll be bound for surgery.

It is a low-risk, high-reward gamble. Certainly, we don't want to see him any discomfort, but he is in the Cardiac Intensive Care Unit at one of the best Children's Hospitals in the world and they will be able to react quickly to signs of trouble. We should know within a couple of days to a couple of weeks if this is going to work or if he will need the surgery. We can't make the determination until a certain duct closes and we see his reaction. The closing of the duct depends on nature and is different in everyone.

This is good news. They've discovered that the narrowing of his aorta -- the coarctation -- is not as pronounced as they thought and they don't automatically need to do surgery. They're willing to try this alternative in an attempt to limit his fragile body to just one surgery, likely to take place six months or so down the line. That is a really big surgery and they want him to grow a bit and be stronger.

If this works, we might be taking him home as early as next week.

Even the good news of taking him home is a scary proposition, because we will have sole care and responsibility for an infant with a serious heart condition, but we're willing to take that on because we don't want Tyson growing up in a hospital. He's going to spend enough time here.

I wish I had more to report. There is a lot of hurry up and wait here. You get all geared up for the next step only to be told it is a lengthy process. They really want him to grow more because it will be easier to determine the problems and easier to fix them.

I also wish I had something funny to report. Not a lot of jokes and laughs in the cardiac unit. I will, however, expand on something I said in a Facebook post (and this has nothing to do with my particular situation): hug your children. Count your blessings. Quit griping about your daily problems. I've seen teenage heart transplant patients, babies who will be vegetables all their lives and kids who have to worry about taking their next breath. This place is a dose of reality and a slap in the face to what real problems are. I can't comprehend what some of these families are going through and  I have incredible respect for their strength.

Ok, enough soapbox.

In other news, we did learn that he does not have any of the more obvious genetic diseases associated with heart defects. They are conducting further testing.

Really, mostly everything has been positive. He is strong. The deformities seem to be less than expected or at least in the right places for best-case scenarios. He's far from out of the woods, but things are definitely going our way.

I've been off since Friday. I don't have a lot of time because it is a new job,  so I need to get back in. Brooke, trooper that she is, is making mega strides in recovering from the C-section. She'll do most of the monitoring for us.

We will keep you updated.

The Arrival of Tyson

No burying the lead here: Tyson came into this world strong and incident free.

I must admit I was a little surprised to see eight people standing patiently at the bassinet awaiting his arrival into the world. This was a clear indication that they were expecting complications. But he was near perfect. 

I say "near" because his heart issues did not miraculously disappear. But at least we avoided that first surgery point. And everything else about him is great! He is a strapping 7 pounds 3 ounces, has all his fingers and toes and scored well on his Apgar test.

And he has the distinct cleft chin that tells me he is mine. It is a Gregg trait that unfortunately has ensnared my children. The sunken chin gives the appearance of a scowl or dour mood. His may be more distinct than mine or Sydney's.  But I was glad to see it, because, prior to the birth, when my wife was filling out paperwork and the hospital employee asked if the baby would be the same race as her, I sensed a little hesitation in her voice when she said yes. I was sweating bullets for awhile. 

The day started out with a few complications. Emergencies pushed us back a couple of hours and forced us to switch delivery doctors. I was not happy with this. As evidenced by the eight people standing bedside for our birth,WE WERE AN EMERGENCY! I wanted the doc my wife was comfortable with. 

Also, that forced Brooke to wait a few hours on a really uncomfortable stretcher. I used to work for Hill-Rom, the largest hospital bed company in the world. It was my job to help sell our products. I know a little about these things. We were on a competitor's product and it was a piece of crap. Right across the aisle was a Hill-Rom maternity stretcher. I so wanted to pull a switcheroo. 

I expressed my displeasure about the stretcher on Facebook. Shortly after we delivered, I got a call from Good Sam's corporate offices wanting "to hear about my recent dissatisfaction with a stay my wife had at the hospital." Now I don't know if that call was prompted by the Facebook post or a comment I made to the nurse about not being happy with the doctor switch, but that was impressive. We were barely out of the delivery room when that call came! I politely told the guy I wasn't looking to get anyone in trouble and backed out of the call. 

They just saved my kid's life; I wasn't going to ruin someone's annual evaluation. 

The delivery went well. No bloody noses for me. My wife was an absolute trooper. I tried to tell her a few jokes to keep her mind off the fact they were carving up her belly like a side of beef at a slaughterhouse, but she seemed in a good mood anyway. 

In an attempt to get a picture of Tyson, I did make the mistake of looking on the other side of the curtain, if only for a brief second. My advice to prospective fathers: NEVER, EVER do this. 

After birth, the little guy was taken to neonatal intensive care, where they hooked up the lines for his medicine. I went with, while Brooke went to recovery. When I got there, they told me to take off all my scrubs. About five minutes after that, they told me what they were doing required a sterile environment and I would have to leave. Well why the hell did you tell me to take off my scrubs?

After they hooked him up, they brought him to see his parents and grandparents. Sadly, we only got about ten minutes with him. The whole time, he was in this specially designed transport vehicle that looked like a souped-up incubator. It was actually kind of cool. He also had his own four-person transport team for the trip, which was only a couple of miles. 

Once he got to Children's Hospital, it took them a few hours to get him situated. They kept me out during this time, which worried me, but once I got in, they advised me he was doing good and everything was fine. 

Then the big news: the echocardiogram. It revealed exactly what we expected. He's got a narrowing on the aorta -- a coarctation -- and the Double Outlet Right Ventricle. He will need surgery next week on the coarctation and they will decide Tuesday whether they open him up and do the while kit and kaboodle. I think things depend on where these deformities are located, which also determines severity. We are eagerly awaiting the big Tuesday pow wow so we know our plan. 

Until then, I will stay with him here at the hospital. His mom is trying to get a pass from the other hospital to come over. I pity the fool doctor who stands in her way. We are even going to bring wild woman Sydney to see her little brother today. That should be an adventure. 

So here is what I can tell you: despite the chin, my boy looks to be a handsome young fellow. He is healthy outside of the heart and even looks a little strapping, like he might some day be an offensive tackle. He may need that weight, because he doesn't get to eat for awhile. 

He is much loved by his parents, grandparents, extended family and community -- all of you. If prayers and good thoughts count, he will get through this. 

Let's roll!

Tomorrow’s the big day.

I’m nervous.

I’ve been through this before, but if you remember, during my first experience, my blood pressure soared so high my nose spurted blood all over the operating room.

I’m not exactly Mr. Calm in this situation.

Add in the concern over my son’s heart and I’m probably going to be a mess. And when they place that child in the specially-designed neonatal ambulance to transport him to Children’s Hospital, I’ll probably be a blubbery mess.

Actually, it will happen before that when they let my wife hold him for a few minutes and then whisk him away. My heart will hurt along with hers.

Even tough guys cry, right?

We’ve done what we can to prepare for this. My mom is here for a month if we need her. My mother-in-law comes for more than a week.

Yes, my head is going to explode.

No seriously, I’m glad to have them. They will be a HUGE help. Big thanks to my brother, Rich, who not only funded my mother’s stay, but purchased her a decent ride to make the trip.  

My father-in-law is going to be here for a few days, too.  Maybe I can get him to mow the grass.

Guys are helpless in these situations, so we do what we do. If you are local and have any household projects, let me know. I can send him your way.  

Plenty of friends have volunteered to help with Sydney and the dogs, if needed. Thanks to EVERYONE for the offers of help and well wishes. We are truly blessed with great friends and family.

As a brave man said on 9-11, “Let’s roll!”

I’m anxious to know what we are facing. I want to get down to the battle.

Doctors are fairly certain he’ll be fine coming out of the womb. They’ll make an assessment right away to see if he needs surgery. If not, they’ll put him on medicine that will keep him alive until Tuesday, when all the big-wig doctors will meet at Children’s Hospital and make a decision on how to proceed. He’ll either have surgery that week, or they will wait several months until he is stronger. It will depend on the severity of his deformities and where they are located.

If you’re keeping track, there are three potential points for surgery: out of the womb, within the first week or so, and six to eight months in. One thing for sure: he will have to have at least one open-heart surgery at some point.

Regardless of the decision, we have no idea how long his first stay in the hospital will be. He will be monitored for some time before he can come home. So it is difficult to plan right now.

We just want to whip this thing and get life back to normal as soon as possible.

I’ll keep you all updated via this blog and Facebook with posts and pictures.

By now, you know writing is therapeutic for me. Here’s what I have come up with for tomorrow:

Tyson

He has his father’s blood
A fighter’s blood
Blood so furious it rejuvenates the fallen

He has his mother’s dreams
A believer’s dreams
Dreams so vivid they wake the dead

He has his sister’s smile
An innocent’s smile
A smile so brilliant it lights the dark

He has his family’s love
An everlasting love
Love so strong it touches the soul

He has his community’s hope
An overwhelming hope
Hope so absolute it overcomes all doubt

He has his inner strength
A warrior’s strength
Strength so powerful it heals the broken

The Household of Sisterly Love

We have tried to get Sydney ready for Tyson's arrival. Do they have anger management classes for 2 year olds?

My sweet, pleasant little girl gets all the attention in our house. Having to share might put her on an anger bender similar to the late-night ravings of Amanda Bynes. Instead of Jenny McCarthey, it will be little Tyson taking the brunt of that anger.

I've told you before of her anger issues. And here. And probably a half dozen other posts. She is easily frustrated and quick to blow a fuse. Sound familiar? Yes, you got it….just like Brooke.

It is nothing for her to get mad at something -- say she wants to play with an object and I say no -- and grab it and squeeze it as hard as she can. She literally gets a look on her face like she is an Olympic weightlifter straining to set the deadlift record. I alternate between laughing and trying to explain how this is not acceptable behavior.

Just this week, she was enjoying the fan blowing air on her when she decided to touch it. I forcefully told her she was not to touch the fan. Her response was to grab the sides of the fan and squeeze it as hard as she could. Not sure what she felt like she was accomplishing, but she gritted her teeth, grimaced and blew off some steam.

Her middle name is intensity.

I don’t think she does this with other kids. I’m fairly certain her child care provider, the unflappable Miss Amber, would have 1) told us about it and 2) booted her from day care if she did it with any regularity. In fact, the only time I have seen her with other children for a great deal of time (outside of day care) she was downright passive when the others were aggressive towards her. (That led to her dad giving her boxing lessons.)

But she does it plenty with inanimate objects such as the fan, her food for some unknown reason – you should see her squeeze the hell out of a blueberry – and, occasionally, her dogs, if they knock her down or don’t get out of her way fast enough. Lucky for them, her squeezes are only strong enough to harm a, well, blueberry.

I’m fairly convinced she has a career in the roller derby awaiting her. I’m signing her up for karate classes as soon as she can walk for 15 minutes straight without falling.

So, I am worried about her demeanor when it comes to sharing her parents with another child. The other night, when Brooke and she visited with friends, some of whom had babies, she was NOT happy when Brooke took a little one into her arms. She immediately ran over, pulled at her mom and said “Help me!” which is her universal appeal for our attention.

J-E-A-L-O-U-S.

This is what little Tyson is facing. Hell hath no fury like a 20-month-old ignored.

We’ve tried to do what we did with the dogs when Sydney was coming. We have a baby doll we call Tyson and we ask her to hold it and feed it and even kiss it.

She throws it.

I have one book we bought about the arrival of a new baby and I read it to her, substituting Tyson for the name of the baby.

She pushes it away and grabs for the nearest Sesame Street book.

(By the way, did you know there is a character named Murray on Sesame Street? And Abby Gadabi (spelling?) I just learned about Elmo a couple of years ago and now I find out about these two and some orange female character with a name I do not know.  Progress, I guess. But the Street still looks exactly like it did on my grainy black and white when I was drinking from a sippy cup. Where’s the updated set?)

She’s not exactly warming to the Tyson factor. If anyone has any tips, I will take them.

We really won’t know until he gets here what her real reaction will be. She might suddenly develop a nurturing gene overnight.

I’m not counting on it. I remember the fights I used to have with my younger brother and sister. Until she was a teenager, I am pretty sure I had my sister convinced we found her in a garbage can and adopted her. As for my brother, I can remember my mom locking us in a room one day and telling us to SETTLE it. I am not sure what “it” was, but whatever it was, it cost my brother a bloody nose.

I’m fairly certain Brooke and her brother, Blair, had similar battles.

But of the few people on this earth I’d battle for, maybe even die for, my brother and sister are at the top of the list. We don’t always get along, but we are blood. That means everything.

If I can get that kind of commitment out of my two kids, I’ll put up with a few Olympic-like squeezes here and there.  

And the name is....

Quick post.

We are a week away. This time next Friday, we will be the proud parents of a young boy.

And that boy’s name will be….

Tyson George Gregg.

Tyson won out over other finalists such as Tate, Kellen, Max and Braeden. I think it was a compromise. My favorite was Tate. Brooke won’t acknowledge a favorite, but I think her's was Kellen.

Once we learned of our son’s heart condition and the battle he was going to wage, we decided to pick a name that signified “fighter.” Believe me, this boy is going to be a ferocious fighter.

But none of the names that mean “fighter,” “brave” or “strong” resonated with us. So, we went back to our original list and we agreed on Tyson.

He isn’t why we picked the name, but one of the most ferocious fighters I have ever witnessed in the ring was Mike Tyson. His knockouts are legendary. His quick demolition of Michael Spinks was a thing of beauty.

I am talking about Mike Tyson in his prime, before he became the sad, tattooed, Karyoke singer who got famous in those Hangover movies.

A young Mike Tyson rose from the mean streets of Brooklyn to battle the toughest boxers in the world and he beat them down with a fury. If my kid can tackle heart defects in the same fashion, he’ll be a winner.

But that’s a bonus. We really just picked Tyson because we like the name. And, I like the shortened version, Ty, too. I always try to consider what people might call him other than his given name and Ty is acceptable to me.

George is a family name. It is my middle name and my maternal grandfather’s name. It is also my wife’s maternal grandfather’s name. Her maternal grandmother’s name was Georgie. I don’t normally like to burden a kid with the legacy of a family name, but I think this will work out because it is only a middle name.

I’ll try to post one more time before the birth, then I will keep everyone updated on a fairly regular basis as we sort out the little one’s medical issues.

Thanks again for the support!