Bubba’s Factor

Part 2 by Derek Markley

With Abbey happily moved over to a hotel, it was time for us to focus on getting Bubba to sleep. His little-kid incarceration was a concern. The main thing I remember was how incredibly horrible I felt seeing him in a hospital crib with metal bars raised on all sides. This had to be one of the saddest moments of my life. We knew he had to go to sleep, which he would not do quickly. He’d sit up and we’d have to reach through the bars to comfort him. It would’ve been easier to just push the bars down and play with him. Unfortunately, we knew he needed sleep. If we kept getting him out of bed, we’d be up all night.

I was treated to having the lounge to myself. The chair/bed wouldn’t turn out to be the strangest thing, nor the sleeping in the middle of a lounge area. There was a shower in the lounge. You can’t make showering that close to strangers feel normal. Nothing else about our day was normal or comfortable. My son was in a metal cage and my wife was sleeping in a recliner beside him. We were in the middle of St. Louis and our son had blood that didn’t clot. We were going to send our small child into surgery, and he was going to have a metal disk placed in his chest.

The next morning I went down the hall to see Bubba and Ashley. We were about to have a very long day. We’d begin by having Bubba factored up. The people at St. Louis Children’s Hospital were adamant that his factor level would be through the roof to assure no complications during surgery.

Surgery day always means that the patient will be given some type of medication. Bubba was given medication. He went immediately loopy and it was hilarious. I’ve often wondered if they give little kids their meds slightly early so the resulting goofiness is something the family can enjoy. You’re given a break from the handwringing and gut churning that has been gnawing at you.

The unfortunate truth was that he would be heading to a surgical suite and we’d be left outside trying to put forth a normal countenance that masked the fact we were both on the brink of sanity. There was no parenting class called, “How to Not Go Feverishly Insane Because Your One-Year-Old Child is Having Surgery.” My palms are sweating a little bit right now just thinking back to that time. This is one of the uncomfortable truths about raising a child with a serious medical condition. You will have to experience things that are not a part of the lives of most parents. These things will be stressful and unpleasant. These things will make you feel like you want to vomit. These things will be necessary to assure that you can help your child deal with whatever disorder, condition, or ailment has become a part of his or her life.

After roughly 32 hours (my estimation may be skewed), the physicians emerged to tell us that the procedure was complete and Bubba was headed to recovery. Everything had gone as planned and the port was in place. Later that day the nurses would have to access the port to complete his next infusion. Post-surgery infusions were crucial to assuring that the healing process began properly.

There are not many feelings in this world that allow you to decompress as fully and quickly as you do when you’re informed that your child’s surgery went exactly as planned. After what seems like forever, you are allowed to let your weapons-grade stress level return to somewhat normal human proportions.

We were taken back to a general recovery area. Ashley was holding Bubba and gently speaking to him. We just needed his eyes to open. Any small indication of being awake would’ve be great. This should’ve been one of those Disney moments when the little kid opens his eyes, sees his mother, and produces a massive smile. Then a small sparrow would land on Ashley’s shoulder, chirp happily, and a warm sunset would be visible on the western wall of the recovery room.

That was not our outcome.

Next week: Post operation success?

Derek Markley lives in Saltillo, Mississippi with his wife Ashley and their children Abbey and Bubba. He is the executive director of two University of Mississippi regional campuses and an assistant professor in the school of education. Ashley is a fourth grade teacher in the Tupelo Public School District. Derek is author of The Bubba Factor, which can be ordered on Amazon.com.

Bubba Gets a Port

by Derek Markley

Owen, who we call “Bubba”, has hemophilia B. He had two bleeds in two months before his first birthday. Our physician made a recommendation that would change our world.

“Bubba” Markley

Bubba was going to get a port. A small circular piece of metal would be placed in Bubba’s chest. There is a line running from the port that would be inserted in a vein. We’d use the port to infuse him with clotting factor. We’d be able to do the infusions at home after being trained by a home health nurse.

I had so many questions. I furiously Googled terms to get a better idea of what was going on. The port images I found had an external line, a piece of plastic tubing outside the body. It didn’t look like it would be a great option for a little kid.

We were informed that the port would not have an external line. The only time Bubba would be accessed would be when we were infusing. The port is accessed any time a needlestick is done to push medicine into the port. Our physician also told us that we had the ability to use a low-profile port. This meant that the port was thinner than other models and would not stick out as far when implanted.

Even now, more than eight years after the surgery, I still have no way to accurately describe our feelings about what happened. I can describe the day in detail, but I can’t put my feelings into words. We had to be in St. Louis the night before the surgery at the St. Louis Children’s Hospital (SLCH). Bubba’s surgery would be early in the morning. He’d need to be in the hospital so they could give him enough factor to make surgery possible. We’d never spent the night in a hospital with a small child. But the decision was made. The Markleys—my wife Ashley, Bubba, daughter Abbey and I— were surgery bound!

Ashley’s mother had made the long trip from Washington D.C. to take care of Abbey throughout the process. She’d found a hotel room and Abbey would stay with her the night before the surgery. I would be spending the night in the room reserved for family of patients. The room had reddish-orange chairs. What appeared to be an ugly, uncomfortable chair was actually an ugly, uncomfortable bed. With the pull of a lever the front of the chair extended forward as the back simultaneously laid flat. Bam! It’s a bed—in the middle of a room where other strangers might choose to sleep, read, or otherwise hang out.

Ashley was going to sleep in the room with Bubba. The surprise came when we saw Bubba’s bed.

We were introduced to the Baby Hannibal Lecter line of beds. It was immediately noticeable that Bubba’s bed looked more industrial than the standard crib. It didn’t take long for a nurse to step in and show me exactly how this bed differed from most. Ashley and I were shown a demonstration of how the metal bars, which started on the bottom, slid upward and locked in place. It was a Bubba jail.

It looked like Trent Reznor designed it in the early 90s during his industrial phase. The experience was going to turn our kid into a little Goth in training. We’d need to get some black hair dye and a magnetic nose ring. He’d just mope around the house talking about things like the darkness in his stuffed duck’s eyes or the repressed aggression of the Backyardigans being the root of their imaginative adventures.

… and he looked absolutely pitiful when we put him in it the first time.

By pairing incarceration with surgery, I was certain that we’d taken two strong steps toward assuring that Bubba would never forgive us.

We would have a number of meetings that day. The people at SLCH were seasoned veterans and addressed many of our questions before we even had a chance to ask them. By far the most stressful time came when we sat down with the two physicians who would be performing the surgery.

I also had a moment in which I realized that I was not a child anymore. One of the physicians looked suspiciously young. Like most people I’d always visited doctors who were significantly older than me. It hit me like a ton of bricks. I was turning into the person that says, “I’m not letting that kid operate on my child.” I was a mere step from complaining about underage intruders on my lawn.

Once the doctors explained it to us, the process itself did not seem complicated, compared to other surgical procedures. My concerns were still firmly in place. You’re operating on my child who very recently celebrated his first birthday. The child going under the knife also has a small issue with blood not clotting. There is bleeding involved during surgery.

We were soon back in Bubba’s room ready to face the next challenge. How to entertain a toddler while sharing a hospital room with another family and their visitors? The answer is: Get out of the room. SLCH made a wise investment and bought plastic kiddie cars for use on our floor. They had a large handle on the back that extended upward so moms and dads could exert some control over their kid’s driving. It was the Hemophilia 500. Like many hospital floors, the hallways were laid out in a square with the large nurse’s station in the middle.

Bubba in the hospital

We went around.

We went around again.

… and again and again and again.

I began to curse the little red car.

But it kept Bubba happy and that was our goal.

Next week’s blog: Surgery!

Derek Markley lives in Saltillo, Mississippi with his wife Ashley and their children Abbey and Bubba. He is the executive director of two University of Mississippi regional campuses and an assistant professor in the school of education. Ashley is a fourth grade teacher in the Tupelo Public School District. Derek is author of The Bubba Factor, which can be ordered on Amazon.com.

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