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.