“We have to go to the ER,” is a phrase that no one really wants to say especially about their own child. In our house, it’s practically a family motto. Before we pile into the car and high tail it to Lurie, the only ER for our medically complicated little dude, we evaluate the situation and try to make the best choice. No one wants to blow three hours on a trip to the emergency room when all the bones are intact and it’s only a papercut. Even when Aleck cracked his femur on New Year’s Eve we didn’t take him to see a professional until January 2nd. But two weeks ago, when Aleck missed the step between the family room and the kitchen in my parents’ house in Highland Park, once glance at what used to be a leg and now looked like an arm bent sideways, told all of us that we had no other choice.
Carefully Craig placed Aleck in the backseat of my mom’s car since our car had a generator in it that was on its way back to Home Depot in Vernon Hills. We put pillows under his leg, Craig climbed onto the floor of the back seat to help secure Aleck as comfortably as possible for the thirty-mile drive to downtown Chicago. Screaming at the top of his lungs, Craig desperately tried to keep Aleck calm while simultaneously trying not to vomit all over the place as he was staring straight into Aleck’s mangled leg, the bone pressing into the incisions from where the hardware had been removed only six weeks earlier. I drove as smoothly as possible, Craig asking for me to open and hand him water bottles, telling me to call the ER to let them know we were coming and what we would need, telling me to call his surgeon at Shriner’s so that everyone was on alert and on the same page.
Now, many have asked why we didn’t just call an ambulance or take Aleck to the nearest ER, but even in an ER where they have all his medical records we often get bombarded with questions and concerns about the contracted parts of Aleck’s body that had nothing to do with the trauma that brought us there in the first place. We need to be taken care of by professionals who at least have the access to the information they need and won’t start X-raying his elbows when his tibia bone is protruding through the skin. Shriner’s is not set-up for urgent care so going there wasn’t an option.
Lucky for us, shortly after we arrived at the ER we found out that Aleck’s surgeon at Lurie was in the building and the team quickly looped her in. It was decided that they would admit us, after painfully trying to put Aleck’s leg back into place, and they would take care of him while he was under anesthesia. The first step was to see if she could put his tibia into position in a stable enough manner to cast it. If she thought she could get it stable she would send us home and we would see how he was doing. One big concern was that his incisions from the hardware removal were still fresh and had been scabbing and leaking a bit. They weren’t infected, but now that his bones were pressing into them they didn’t look good and a wound infection could lead to a bone infection. Dr. Swaroop explained that if she was unable to get the leg into a stable position they might do a closed reduction and put hardware in through the top and bottom of the bone to add stability. However, they also might just go full-tilt boogie and proceed with an open reduction, cutting Aleck’s leg open right at the breaking point which was also his freshest incision, and putting in a plate with 8 screws to hold it in place. Hey, if my little guy was going to get cut open again, she’s the only person I’d choose to do it and we were so thankful that this accident was so well coordinated with her schedule. An hour after he went in for surgery they called to tell us that it would be an open reduction and we both breathed a sigh of relief. Yes, it would be the most painful of the options, but with all of the work we’ve done to that leg, it would also be the most secure and would ensure that we wouldn’t lose any of Aleck’s progress.
So here we are back in this all too familiar position. We’ve got the box of muk pads from the basement, the pee jar in the bathroom, and a red cast elevated on the couch. We’ve just hit the two-week mark so we now have permission to let his leg dangle, this way he can sit in a real chair to eat dinner or in his own wheelchair to get around our apartment. In two more weeks, the cast will be removed and the sutures will come out. Then he’ll get a new cast with a walking boot on the bottom. Technically he’ll be allowed to put weight on the broken leg, but we are going to take that one step at a time. I spoke with the Dr about that and we have no intention of letting Aleck hobble about with a cast on one leg, the kid can’t stay upright without a cast on and the last thing we want is for him to break something else. But he will be able to do some assisted standing and maybe we can get him to the toilet a few times so that my couch is no longer his commode.
Maybe you’ve noticed but Aleck has gained that COVID-19 weight and has gone from the 55 lbs with a full right leg in a cast (when he broke his femur) to 68 lbs with half of his right leg in a cast. Back in January both Craig and I were patting ourselves on the back that we had been hitting the weight room regularly so that we could carry him around our apartment. Now, I don’t know how our 40-something bodies would do if we hadn’t been working on our strength training for so long. Deadlifting 70-something pounds of your own flesh and blood multiple times a day isn’t the easiest, but we can both do it with confidence so that Aleck trusts us to get him around the house with a smile.
I’ve gotten a lot of questions about the fragility of Aleck’s bones so I wanted to address some of that here. He’s been on and off calcium supplements for years and starts every day with a glass of whole milk. However, whenever there is a lot of surgery and correction that part of the body is more susceptible to a break. And because of the pandemic, his bones were still healing from removing the hardware. On top of all of that, Aleck has very low muscle tone on his arms and legs, that comes with his condition, Arthrogryposis Multiplex Congenita. There isn’t a lot of padding to protect Aleck’s bones when he falls. Lastly, because of the contractures in his upper body, Aleck is unable to put his arms out to catch himself if he falls. That’s why he’s got two sets of stitches on his chin and a fake front tooth. We are so relieved that the tibia and fibula were the only things he broke this time.
In the meantime, we are working to raise money for an adaptive bike for Aleck. It’s great for his physical therapy and will help us get him out of the house once that cast comes off in October and get him playing with his friends. This link is a PayPal link for Project Mobility. When you get to the third screen you’ll see a place where you can write a note. Please indicate that your donation is for Aleck. I’m working directly with the people in charge to be sure that our peeps and their money goes to getting Aleck a big reward for what has been another difficult summer. Thank goodness his attitude is awesome, he’s a professional healer, and we’ve got lots of video games to keep him happy.
