…woh’oh, livin’ on a prayer!”
This was me all through Lurie Outpatient in Lincoln Park yesterday whenever someone exclaimed that we’d made it halfway through Aleck’s recovery. And time has flown by, granted once the screaming and the around the clock medicine stopped. Right now all we do is give him Valium in chocolate pudding sometime between 5-5: 30 pm, then his Zyrtec and Advil before bed. We’ve finally figured out how to combat the resistance and the medicinal revolution has subsided. It’s been very confusing to us since Aleck takes Zyrtec every night, he practically begs for Advil when he’s not feeling well, and when he went through serial casting for his elbows 2 years ago Craig gave him anxiety medicine crushed in chocolate pudding every week without a fuss. But this isn’t under typical circumstances, this is a boy who’s just undergone a very traumatic experience, taken away from his parents to stare at a bunch of confusing faces while he falls asleep, waking up to different faces, and then having nurses poke and prod at him for 5 days. On top of it he’s completely reliant on us now for everything and has been desperately looking for control, so the only thing he can control is what goes in his mouth. He now gets to dictate the time, within a certain window, and so far so good. We can get him calm before his body starts it’s daily revolution at 6 pm and he’s ready to throw that splint right out the window.
Yesterday was a rough day. The surgical resident came in and introduced himself and started talking about removing Aleck’s bandages from his leg and in the inside of his thigh, right by his groin. He left the room and then came back with his gloves, knelt down next to Aleck and was about to start removing the bandages when Craig and I lept off of our seats to stop him. We insisted he go out to the nurses’ station and find multiple packs of adhesive remover before he lays one hand on that sweet little skin. After all, the gauze, bandages, and taping were all the way up his leg, across his hip, and in that very sensitive spot by his parts. He ran out and got what he needed and came back to start the process. Even with this doctor’s very careful constant rubbing of adhesive remover, and even with his very steady and gentle hand, Aleck was inconsolable. Even with the IPad on non-stop videos of Super Mario Odyssey held right above him, he cried, screamed, and shook so hard his head was soaking wet with sweat. With the really loud screams, we praised Aleck for his “feedback” for the doctor and later wondered what a parent would do who didn’t have experience with adhesive remover and didn’t know enough to tell the resident how to do his job properly, what if they couldn’t speak English? Do you know how much skin that poor kid would have lost? I know residents are really aspiring doctors there to learn, and I’m glad we know how to teach them, but what do families do who don’t have all of our experience so that they can teach the residents, this isn’t the first time we’ve had to take one to school and I’m sure it won’t be the last. And why couldn’t they have warned us before we went to the appointment that bandage removal was the theme of the day? Then we all would have had Valium crushed in our chocolate pudding that morning, holy cow.
On the bright side his x-rays look great, his incisions look perfect, and now Aleck can sit without the splint on for 3 hours a day at 1 hour increments. He can move his legs freely, but no weight bearing (walking, standing), since he still has the cast on his leg from the tibia fibula correction. Because of the surgery and recovery he has to build up his core again to sit up. Right now we can prop him to about 30 degrees, but not much farther without pain and discomfort. We have the green light to work him to sitting up in a chair, even bending his knees and letting his casted leg hang over the side. Craig is on top of all of this and excited to work on all of this with Aleck before we get to our time at Shirley Ryan. We figure the better he’s doing before he goes into inpatient, the faster we can get him back on his feet. Plus it gives them both something else to do besides sitting on the couch playing video games and the IPad, which somehow hasn’t gotten old yet.
For me, the highlight of the day was going over to Orthotics to have his splint widened. His orthotist, his very first orthotist when he was 1 month old, was there and waiting for us. She told Aleck all about the hip splint (click here to see it) she had designed for him when he was a baby, and how everytime he’d outgrown it he’d be up all night screaming, and I’d walk into orthotics with tears in my eyes to get it all corrected. Somehow it’s comforting to me to run into people who were witnesses to all the exhausting and painful experiences I endured during the first two years of Aleck’s life, sometimes it all just feels like a bad dream. Since we first met her she’s gotten married and now has a two-year-old little girl with the sweetest smile. When we said goodbye I gave her a huge hug and can’t wait to see her again in 3 weeks when his cast comes off and he gets his new AFO (ankle foot orthotic) for his right foot, she’ll be making it.
I’ve posted the before and after pictures down here, and as you can see that’s a lot of surgical tape to remove from my baby’s delicate skin. And you can also see that he did a great job, a day later and it all looks perfect.
