Tuesday, July 30, 2019

Long Recovery

I had a dream last night that Stow was having a meltdown and Ren, misunderstanding my request, picked him up in an attempt to help get things under control. Stow weighs well above Ren’s 40-pound lift limit, so picking him up caused Ren's broken rods to fold upon themselves, leaving him in a tangled heap on the floor. A couple of days before his 2017 surgery, I had a bright and airy dream in which the procedure was over in the blink of an eye, and by the time I got to Ren’s hospital room, he was standing tall and unencumbered, grinning at the reflection of his restored posture. The dreams I have the week before surgery are never subtle.

Ren comes around slowly after surgery; he can sometimes spend three or four hours in recovery. Sitting in the waiting room, long after the scheduled finish time, long after other families have come and gone and come and gone again, long after the doctor meets with me in the tiny consultation room, so small that our knees almost touch as he tells me things went as well as they could have, the gravity of what lies ahead always hits me hardest.

At some point, the nurses call for me because they can’t wake Ren, and they think that, somehow, his waking has gotten lost in translation--as if he doesn’t realize he’s supposed to open his eyes already. The thing is, though, I don’t want to translate here; I don’t even want to be here. What could I say to Ren that they haven’t tried already?

The recovery room lacks anything that might give even the slightest hint of homeyness or comfort. Sterile and all hard, shiny surfaces and white sheets with beeps and drains and businesslike nurses, I feel most lost there, as I look down at Ren, who is pale and non-responsive and whose sleep apnea repeatedly triggers alarms. Since I can’t really process the sights and sounds of Ren’s incapacitation, I focus on the the feet of nurses in the recovery room and wonder why they always seem to be wearing Crocs. Why is it always Crocs?

The first major surgery Ren and I went through together--a revision surgery following a serious shoulder injury--we’d been married just three weeks. It was his third shoulder surgery in six months and was done at a hospital two hours from where we lived. In my tiny tin-can of a car, I found myself commuting on unfamiliar roads, barreling along the highway at speeds my car wasn’t meant to go. Pre-GPS and cell service, I had to memorize the exits and back roads that got me to the hospital with the impossible-to-pronounce name. And, once there, I had to remember how to find my way through the snaking, maze-like hallways to Ren. Even now I can see the farm fruit stand that marked my first turn off the highway and the onsen center--named (puzzlingly) after Confucius--just before the turn that led into the hospital. I don’t remember what I did while I waited for Ren’s shoulder repair to be complete, but I do remember being brought into the recovery room only to find Ren lying naked on a gurney covered by a single towel. Unconscious but in pain, he cringed and squirmed, and it became clear to me that my job was to watch over him and his towel. 

Nineteen years and ten surgeries have passed between then and now, but I know come Monday, when he has his seventh spine surgery, I will find myself watching over Ren as lost as I was that first time. I will find myself, once again, feeling like I have no idea what to do; feeling like I want to fall apart, but knowing that if I don’t keep it together on that first day, there’s no way I will make it through what comes next.

I know I am not the first person to go through difficult medical situations with a spouse. I know that there are people all around me who care and who want to help. I know that each week we get further beyond the day of surgery will be a week closer to reclaiming some kind of normalcy. But, I also know no one can do this for me, and there’s something impossibly lonely and isolating in that.

Friday, July 5, 2019

My Heart

I am sitting in the cramped hospital room watching the nurse keep her eye on Sky's vitals. His heart rate keeps falling and setting off an alarm. She tells me not to worry, that the medications they used during his procedure just worked a little too well.

Procedure. I've always hated this word in reference to something being done to a human body subdued by anesthesia. All week Sky and I debated the line between surgery and procedure. Now that he's a teen, we don't agree on much, but we both agree that if cutting and repairing are involved, it should be called a surgery.

"Besides," he says with a grin, "I want to be able to tell people I had heart surgery this summer."

This is out-patient, 2 or 3 hours under general anesthesia in order to thread a catheter up to his heart and put a roadblock in the spare electrical pathway that keeps causing it to race. It doesn't matter to me what they call it; the pre-op process and the time spent waiting for updates from the surgical theater are more than enough to trigger memories of so many surgeries past. Ren and I get out long enough to get some overpriced, ridiculously-healthy, oddly-paired food at the "Asian" salad bar, but soon we are back and waiting in the room that suddenly seems cavernous now that Sky's bed has been rolled away with him in it.

When the nurse calls to tell us all is fine but that they have to cross into the left atrium, I thank her for the update and then try to focus on the tiny tennis ball high on the tiny TV screen. It's the first round of Wimbledon, and we don't get cable at home. Ren wants to know who called and what they wanted. I find it hard to explain in Japanese as my anxiety rises in my chest and settles in my throat. I know that crossing to the left increases the risk of dangerous clots and stroke.

The room has no windows, and I have to traverse a maze of hallways in order to reach one. The prospect of tracing my way back to the sunlight seems particularly daunting, especially since the hospital lobby is a dizzying combination of cows and farm theme and old cars. I'm at a loss as to how to keep my shit together. This surprises me given the vast experience I have with hospitals and surgeries. Ren barely takes his eyes from his iPad. Apparently his coping strategy works better for him than mine does for me.

And, then, suddenly, it's over and the doctor comes in and explains what he did before we're asked to wait for ten minutes in the hallway while they get Sky settled in his room. Twenty minutes later, we are still waiting, so I knock on the door. The nurse says that most parents don't handle seeing their kinds on breathing support well, but she knows how many surgeries we've been through with Ren and tells us we can come in if we're ok with it. I'm more ok sitting with Sky than I am in the hallway with strangers, so I tell her we'll be fine. Like Ren, Sky comes around slowly after anesthesia, and it takes his body even longer to deal with the various meds on-boarded during the surgery.

The lighting in the room sucks--our options are a massive, blinding fluorescent ceiling light or  a depressingly dark headboard light. We wait for Sky to wake in near darkness while tennis continues on the television. When he finally opens his eyes, he wants to know if it's done. He wants to get out of bed. He wants to watch something else on TV. He switches to National Geographic, some show about the Sphinx and the Pyramids. He's still trying to watch it when they come in to do an echocardiogram.

I often wonder if I am doing right by my kids, by Sky, who is my oldest, my practice run, my test case. Every phase he enters, every new challenge he faces, I am doing it with him for the first time. Most of the time, it doesn't go smoothly and I am convinced I am blowing it. But as I watch them track his heart on the screen, I am transported back to the first time I ever saw that heartbeat. Back to that moment fifteen years ago--before I had a baby, before I learned to doubt myself so deeply--when I was simply awed to see that life growing inside of me. Watching Sky's heart beat so perfectly on the screen I am flooded with gratitude--gratitude that I've been able to hold and to love and to protect and to help grow this heart in this boy.

It's his heart, but as I look at it in the darkened hospital room, I realize that it is my heart, too. It always has been.

My heart four days post-op.