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 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.
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.