Focusing on a New Battle

 

 



 

 

I’ve had more than a few people ask for an update on Tyson, so here it is.

His heart seems to be ok. There haven't been any red flags to this point. The small tear that didn’t completely patch is being monitored and they think it will eventually fix itself.

I don’t want to be overly dramatic. This is not a miracle. But it is a tremendous outcome. We are blessed to have come this far. If I wasn't so bashful, I'd do a thank-you dance in the middle of Cincinnati's Fountain Square, that's how happy we are. 

But there is still a big obstacle to overcome.

First, the good news. His demeanor is better. He smiles a lot more and engages in a little back-and-forth cooing with his mom and dad every now and then. I absolutely LOVE to see him smile and when he is in one of these moods I stop everything I am doing and engage him.

It is so nice that his tiny body doesn’t have to work as hard anymore. He used to be constantly exhausted, as well as writhing in pain. You can now see the potential for him to be a “normal” baby and he has several times a day when he is actually a pretty happy kid.

But not all is well. I’d say that where he was a 10 on the scale of cranky babies pre-surgery, he is probably now a 7. He still has a lot of stomach issues. While the doctors told us to expect this with heart babies, we are still a bit unclear on the connection between his heart problems and his stomach issues and wonder if something else is at play. 

He simply doesn’t like to eat. I believe it causes him pain. He gets extremely gassy and it is very painful, so he doesn’t want to put himself through that experience.

This is how bad it is: after we try to feed him everything we can via bottle, we then have to pour the rest down his tube. When you hook the syringe up to the tube, you sometimes can hear gas bubble up through the tube and watch it come to the surface of the milk in the syringe. On really bad days, when he gets particularly cranky, he can force the whole syringe-full of milk he just drank out of his belly and back into the syringe.

Poor kid. We have talked to doctors and tried different fixes, but nothing is working.

As a result, he is only getting about half of the food they want him to take in a day, and he only takes about half of that voluntarily. We are slowly adding more – 5 milliliters per feed every week – in hopes of getting him up to what a normal kid eats.

Brooke and I hate the tube. Not only is it a burden on us – we feed him eight times a day (every three hours), and each feed takes about 45 minutes – but he seems to really dislike it and we wonder if it is a reason he DOESN’T eat. Filling his belly constantly also leads to a couple of throw ups each day.

The docs don’t seem to mind. Their only concern is getting the food into him. He has fallen off the growth charts and they want him to get his calories up. Whether he is miserable doesn’t matter.

So, we plug away.

I wouldn’t mind waking up every three hours in the middle of the night if we knew it was helping, but I am not so sure it is. The irony for us is we have a baby who would completely sleep through the night, but we have to feed him every three hours. Meanwhile, our 23-month-old still parties like a rock star throughout the night.

If we can’t fix this problem with the feeding tube that runs through his nose, they will eventually put one directly into his stomach. We certainly don’t want that. You can bet we are doing everything in our power to turn this around.

Caring for him is especially challenging now that Brooke is back to work. As you can tell from my previous descriptions, you spend nearly a third of a whole day just feeding him. We’ll soon add therapy sessions to catch him up developmentally. And, of course, he still has numerous doctor and cardiology visits.

We are working on some things to put a system in place where he has the right people to ensure he gets everything he needs and I’ll have more on that in a later post.

To all who have sent prayers and good thoughts his way – the key message from this post is that they worked. He is on the right path and we have every reason to believe he will come out of this A-OK.

But don’t completely forget him. He still has a tough piece of road to travel and your support means the world to us. Someday he is going to understand he made it through on the strength of his community’s shoulders.

Sweden's Little Miracle

 

 

 

I went where no man should.

I entered a discussion on snot.

Why would I enter such mucousy waters?

Because I am passionate about the NoseFrida.

This small, simple, Swedish tool is a must have for any parent. It is the nemesis of snout snot.

So, when a pregnant Facebook friend – congrats Nicole! – posted a picture of a NoseFrida she received as a gift and asked if anyone actually used them, I waded into the mucousy waters with much trepidation and spoke up.

“You will discover it is one of the best gifts you've received.”

I’m not really a guy who is comfortable giving parenting advice to anyone. Despite two children under the age of 2, my parenting knowledge could fit into a six-ounce baby bottle. Thank God for my wife.

But on this topic, I couldn’t resist. I had to have my say.  

“It is the absolute best way to clear congestion.”

Needless to say, not everyone agreed with me. Among the jokes and expected responses of “Gross!” were comments such as this:

“So this mom of four....nope, never, wouldn't try it. I'm sure it's great for some...but not me!”

Many claimed that the blue bulbs you get at the hospital are the best way to win the booger battle.

I beg to differ.  

Ever since my wife saw Nancy O’Dell interview Christina Applegate – yeah, Kelly Bundy of Married with Children – the NoseFrida has been a positive part of our life.

Nancy: What is the best piece of parenting advice that anybody has given you?
Christina: There's so much [baby gear] to get! I think... to buy a NoseFrida!

Nancy: What is that?
Christina: The thing that you use to suck the stuff out of their nose. It's called a NoseFrida. It's got a long [tube] and you do it with your mouth.

Nancy: You do it with your mouth?! [laughs] I just used the hand-squeeze nose suctioner.
Christina: Well, there's a stopper. It doesn't go in your mouth. But it's so much more effective. I mean I always had that thing [squeeze suctioner] in there trying to get it out, and it never worked. But this one is magic!

Sydney had a lot of colds when she was younger. She was always congested. We, too, used the blue ball. Until my wife saw the interview with Kelly Bundy.

I must admit, I was grossed out and afraid. But it was worth a try.

The NoseFrida is a long suctioning tube with a disposable filter. You place the tube against the child’s nostril and create a seal. Then you use the mouthpiece to suck out the snot!!!

Yeah, it sounds gross. But the snot never gets to your lips. It is blocked by the filter.

This nifty little invention was created by a Swedish doctor and is 100 percent hygienic. It is worlds better than the blue bulb. The kids don’t like it for the few seconds you suck – they don’t like the blue bulbs, either – but once you are out of their nostrils, they have immediate relief.

Why is it better? Well, here’s what it says on the NoseFrida site:

“NoseFrida is non-invasive – instead of going inside the nose like the bulb, it forms a seal with the outside of the baby’s nostril (creating a vacuum). Parent-powered (mouth) suction is much stronger and more effective than the static suction of the bulb or battery-powered aspirators. NoseFrida is also easy to clean.”

My friend Nicole wondered if she could suck too hard and hurt her baby. According to the web site: “No. NoseFrida is safe to use on newborns and preemies. There is no risk of sucking too hard.”

Sydney and Tyson might not like the few seconds of intense sucking, but it provides immediate relief. You can see and hear their breathing become easier.

Here’s what I know:

·       Rarely do I publicly tout any product. I just don’t like putting my reputation on the line like that.

·       I’m totally intimidated by the thought of offering parenting advice in any forum that would include mothers who know eons more than me.

Yet, I went to bat for the NoseFrida. Draw your own conclusion.

But this isn’t like Hair Club for men. I’m not also a client. I’ve yet to ask Brooke to pony up to the NoseFrida and give it a whirl on my stuffy nose.

There are just some places even a husband and wife cannot go. Do a little dance, suck a little NoseFrida, get down tonight…

I also couldn’t legally go on TV and proclaim to be a regular user of the NoseFrida.

Why? My wife handles the snot sucking in our family.

That stuff’s just too gross for me.

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.