On Wednesday morning, my son was wheeled into the operating room of our local hospital. Michael donned a bunny suit, cap and booties to accompany him until the anesthesiologist put Calvin under. Standing in the hospital room alone, looking out into the woods—a very similar view to the one we had when Calvin and I boarded in the labor and delivery ward for several weeks after Calvin was born—I felt a bit incredulous. Incredulous that my sweet little unassuming son was being drugged up, cut open, muscle splayed apart, femur drilled and fit with three stainless steel screws, all because of a regrettable accident at school the previous week. I was living one of my worst nightmares as the parent of a child who, despite his inner and outer loveliness, has already been the source of so much angst and grief.
The surgery lasted far longer than we expected, and therefore was a bit of a nail-biter. Michael and I sat in silence, my mind racing to all kinds of places that no parent wants their thoughts to go. But the good news is that the surgery seemed to go well, and it was lengthy because the surgeon had, in his own words, obsessed about the placement of screws in Calvin's wonky anatomy. He told us that Calvin could put weight on his leg whenever he's up to it! We were astonished, having been told earlier that Calvin would likely be confined to his bed and wheelchair for up to six weeks. More good news came later that day when we realized we didn't have to spend the night in the hospital, a place we don't relish for a number of reasons that could fill a blog post or more on their own.
To add insult to injury, that night Calvin had a seizure, which we had seen coming while in the hospital. Like all of his seizure of recent years, it stopped on its own, and we were able to thwart a second one by giving him extra THCA cannabis oil. We managed his hip pain with alternating doses of ibuprofen and acetaminophen and with half a tablet of oxycodone when it seemed, by Calvin's moaning, that the others weren't sufficiently doing the job. Obviously, none of us got much sleep, but we rested better than if we'd been in the hospital.
Through all of the trauma since Calvin's fall ten days ago (seems like eons), many dears have shown their love, concern and support. We had dog walkers for Smellie, and received all kinds of goodies—cards, bottles of wine, flowers, cake, dinner, homemade negronis, stuffed animals, homemade cookies, bread, and other treats. And we got hundreds of loving messages from friends, acquaintances and strangers, and offers to bring food to the hospital. The outpouring of support has been incredible.
This morning, Michael and I got Calvin out of bed. With great help from both of us—Michael supporting Calvin's body from behind, and me in front holding his hands—our boy took three very shaky and tentative steps. A little smile crept across his face as if doing something novel or accomplishing something great. We sat him down on the soft carpet in our bedroom where he crawled a few yards, his left knee turned slightly inward. Once more, we got him into a stand, but he held his leg off the ground as if lame, so we scooped him up and put him back into bed, lavishing him with praise for having done such a good job. Hours later, I hoisted Calvin out of bed to change his diaper, then stood him up for a moment, bracing him. He didn't want to put his foot down and appeared not to be able to bear any weight on it, so I lifted him back into bed again where he remains and is resting.
If today is any indication, Calvin's road to recovery looks like it might be a long one after all. I worry he won't get back to walking as well as he did before the accident, which, though his gait was awkward, he could get around to a great extent by himself without falling or tripping on his turned-in feet. I worry he might be in pain without being able to tell us. I worry he'll regress in other ways. I worry about future accidents. As for going back to school next week, it doesn't look possible without a wheelchair, which would mean the staff would have to do a lot of transfers from chair to changing table and back again. There's plenty of other things to consider—the state of his incision and protecting it, his strength, his stamina, his safety, his ability to heal and rest, his happiness, the risk to him.
This incident has been disconcerting and stressful, and has given us a lot to ponder. But, it has also been a cause to celebrate our good fortune—for our healthcare, our community, our home, our family, our friends and neighbors, for each other.
Yes, the road to recovery might be a long one, but one thing is clear: none of us will be walking it alone.
The sun is on my face, the wind feels and smells as if I were at the beach. The pines are whispering. Through them, I hear the lonely drone of a small airplane. Despite the twinge in my back and hip, plus a tinge of melancholia, it feels good to be moving.
This morning, Calvin was not his best self. His recent conscious-onset morning seizures have put me on edge. They are typically rare, and lately have seemed to come out of nowhere. I'm afraid to send him to school lest one happens on the bus, in the hallways or classroom. Despite seeing hundreds of them over the years, they're hard to take, and I can only imagine how they make him feel.
As I stroll down a sloping road, moving from one side of the black tarmac to the other while noting the big sky above me and amber fields spanning out from my flanks, I sink into my sadness and angst. I ponder their roots, which have taken ahold and perhaps manifested in my stiff, achy parts. I assume it's simply the weight of the world: the damn protracted pandemic restricting our movements and gatherings; the war waged against Ukraine and elsewhere on this small, precious planet; the terrorism and suffering of so many innocent beings; too many deceitful, badgering, insincere, criminal leaders.
Then, I think about Calvin's burdens: his inability to effectively communicate; his incontinence; his poor vision and coordination; his seizures; the drug side effects he suffers. He's confined to his own little messed-up world in which his movements are greatly hindered.
And yet, my poor boy can't sit still. He's on and off our lap almost in the same moment. He often paces without purpose. He sits at the table for mere minutes, taking a few bites of food before being compelled by something to get up and move. I know what possesses and troubles him: impending seizures and, perhaps mostly, epilepsy drugs and the lingering effects of their withdrawal.
For the longest time, I was convinced Calvin's restlessness was just from years of taking benzodiazepines. More recently, however, I think it could also be from one of his current antiepileptic drugs, Keppra, aka leviteracetam, which he's been taking for over ten years. I fear the (brain) damage from both drugs might be permanent.
I read the literature. It's all there, documented on multiple reputable websites (my go-to is rxlist.com): Keppra can cause drug-induced movement disorders. Calvin's akathisia manifests mostly in his restlessness and repetitive, aimless pacing, but I wonder if it's also displayed by his jaw-jutting, teeth-grinding, hyperventilating, knee-knocking, frantic fingers (pill rolling), and what I call crab-clawing. I believe the akathisia is why he likes riding in the car and spinning in his jumper so much; they allow him to move without expending much energy.
Drug-induced akathesia is a miserable affliction which causes some sufferers to feel so achingly restless, frantic and panicky that they take their own lives in desperation. I can't begin to understand what a child like Calvin—who doesn't grasp abstractions such as the notions of tomorrow, life and death—must be thinking or feeling when he is most afflicted, which is pretty much whenever he's awake. I've seen him in states of panic, pain, serious discomfort, distress, malaise and misery, which are often impossible for me to alleviate (thankfully, though, extra doses of my homemade THCA cannabis oil seems to help.)
As I approach the final stretch of my walk, the sky is blue and painted with clouds. The sun is beating down. The wind is still sifting through my hair. The road is flat and smooth, and my bit of melancholia still lingers, though has lessened. I think about how amazing it would be if Calvin could walk these back roads with me without faltering or balking. Maybe the fresh air and quiet could somehow relieve some of his own troubles. Perhaps there's a chance one day my wish could come true. I'll keep embracing hope. Sometimes it's the only thing to hold onto.
|Photo by Michael Kolster|