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So What’s New? (catharsis edition)

I don’t like to start a story when I don’t know how it’s going to end. That could be the writer in me, but it’s also the wariness of an inner self that doesn’t quite accept the randomness, non-interconnectedness of ordinary life.
Although I was never good at keeping this blog updated, I stopped trying—the annual message notwithstanding—last autumn when my dad was hospitalized with heart “problems.” Dad’s in his nineties now and since we don’t live forever, it shouldn’t come as a surprise that in the absence of a specific calamity, we wear out and break down no matter how good our health has been or how prudently we’ve lived our lives. Things that used to be flexible, start thicken, stiffen, or sag, sometimes all three. Which is what had happened—and is continuing to happen—to Dad’s heart. When such things happen to younger folks, medicine hauls out its big guns, but ninety isn’t young.
The cardiologist was actually quite encouraging, saying that Dad’s health was, overall, quite good and he should look forward to a couple more years. Considering that most folks can’t look forward to celebrating their 94th or 95th birthday, that is encouraging…unless you’re the one being told, unequivocally to start counting down, to see yourself as finite and fragile. Or the daughter. Or the wife.
It’s ironic—knowing how a story is likely to end is absolutely no comfort whatsoever.
So, Thanksgiving 2013 wasn’t the most joyous weekend for Abbey-nuclear, but the mood began to lift because human beings tend to be rationalizing, not rational, and we manage to adapt to almost anything. For Dad the lever was the wedding of a friend’s granddaughter. Dad’s a gifted photographer—in another timeline he would have been a photojournalist—and finding the right shots to tell the wedding’s story pulled him out of himself. I’ve become rather too self-conscious to dance in public, but my mother hadn’t—and my dad took the pictures to prove it.
I’ve always admired my parents (I’m biased, of course, but not wrong). Now, though, they’re across-the-board admirable because they’ve survived, they’re bridges to times that are fast becoming inaccessible, and because, despite that, the manage to live in the moment.
Christmas was pretty good. I wrapped each moment in acid-free tissue to store in my memory because I’d begun flinching whenever the phone rang unexpectedly and that quirk wasn’t likely to go away.
As it happened, though, there was no phone call. Midway through January the three of us had gathered for our usual mid-week dinner. Mom got up to get a recipe and on her way back to the table she collapsed in a slow-motion twisting fall that. Collapsing, fainting, and/or falling has not, unfortunately, been an uncommon event since Mom was diagnosed with both kidney tumor and kidney disease back in 2005—especially since the kidney most ravaged by disease was not the one that had to be removed because of the tumor. So, although I shot out of my chair, I wasn’t stomach-sinking concerned until I caught sight of her right foot.
Feet are not meant to point in the direction her foot was pointing. Ankles are not meant to flex in that direction.
Mom wondered if she could get up. Dad wondered if we could get her to the car for a trip to the emergency room. I found that voice I haven’t used since I was raising stepchildren and told Dad to call 911 while I stayed beside Mom, making sure she didn’t move while trying not to say anything about what I knew was a serious situation—because as much as I wanted to tell myself that I was looking at a sprain or, maybe, a dislocation, I was pretty sure I was looking at a spiral compound fracture.
Which was confirmed several hours later when I saw the x-ray. By then Mom was in a splint waiting to be admitted and Dad, whose hearing was damaged in WWII and who has been dealing with macular degeneration for the last several years, was overwhelmed by the chaos. No one had to explain what I was looking at: there was an gap where the tibia and fibula should have been ligamented to the knot of ankle bone. There were white spots in the gap, two big ones and several little ones. I had no idea which spots had been tibia and which had been fibula before dinner, and I was confident that wasn’t important.
Straight-faced, the various nurses, techs, and doctors then presented me with two medical messages: The first was that my mother’s heart, lungs, and kidney were too impaired for the break to be surgically repaired and the second was that she had to have surgery to repair the break. As I stood there, staring at the x-ray and trying to process the information, I’d been given, it dawned on me that I had become the cat and the ER was Schrödinger’s box. So long as I remained in the box, there was no need to resolve the paradox.
An ER is all about process, not destinations and the ER had finished its processes. Mom was stable and although wait-time for a bed in orthopedics was going to be several hours their job was done. Left alone, Mom would drift on a sea of painkillers; she was fighting to stay alert, to pay attention to Dad and me. She was worried about Dad who was already adrift. She told me to take him home, which I did. Once there, Dad told me that he, too, preferred to be alone for the rest of the night. I would rather have stayed with him, just in case, but back when I realized that my parents weren’t “getting old,” or simply “old,” they were “very old,” I resolved that I would respect their autonomy even if I disagreed with their decisions.
Dad was adamant, so I went home. I emailed a sketchy synopsis of the evening’s events to a tight circle of friends and family, warning them that I expected to be going dark for a while and that no news, overall, was good—or, at least, not bad—news.
The next day was long and surreal. Mom was in increasing pain and panic. Dad insisted on getting himself to the hospital and he wanted to take charge of Mom’s care, as he has many times before, but his hearing and vision had betrayed him. He was overwhelmed and, worse, defeated, leaving me, for the first time, on the front line…for both of them.
I’ve been hearing variations on the phrase informed consumer of medical services for a few years now. To me, it’s meant checking things out with Google, but inside a hospital it appears to mean something more aggressive. A hospital’s resources are awesome. They can routinely produce outcomes that would have been described as miracles as little as fifty years ago but like the ER, they can all too easily get caught up in process and lose sight of the destination. My mother’s hospital seems to be aware of this and they have lots of well-considered procedures (or processes) in place meant to keep the focus on the patient rather than the process, but…
I’m reasonably well-equipped when it comes to intellectual resources. I’ve got coding skills and fiction skills—I can construct logical narratives and keep track of the branches. I’ve got a broad vocabulary and a good memory, and I have never been as challenged as I was that day. I made a connection with everyone who came through the door, asked questions and took notes on the answers. Mostly I waited for the three consults—cardiology, pulmonology, and nephrology—deemed essential to resolving the ER paradox: how to safely perform an hour-and-a-half’s worth of surgery on a patient whose overall heath ruled out any anesthesia.
When Mom wasn’t unconscious, she was in agony. I knew what was running in her IV and I knew her short-term memory was being short-circuited and she wouldn’t remember, but that didn’t make watching her struggle any easier and it just about undid my dad. Every so often she’d just stop breathing although her vital signs stayed more or less stable at just above the danger-danger level.
A cardiologist from the same practice as my mother’s regular cardiologist arrived first, around 3PM. He agreed that surgery was both essential and impossible, then deferred to pulmonology and nephrology. Mom’s pulmonologist left a message saying she’d appear around 7PM, which she did. By then Dad had gone home (it’s Florida; he drives, but not after dark). The doctor, Mom, and I had a good consultation (which Mom doesn’t remember). The doctor made best-practice recommendations, but ultimately she, too, deferred to nephrology.
When it comes to anesthesia kidneys rule. If you’ve got two healthy kidneys the fact that kidneys rule isn’t usually a problem, but if you’ve only got one chancy kidney, then the nephrology consult is all-important and my mother’s nephrologist hadn’t bothered to respond to the request for a consult, much less schedule one. At 8PM, we were 24 hours post-fall. Surgery had to happen soon, else we risked insurmountable complications. A visibly annoyed anesthesiologist came in to say surgery was scheduled for 6AM and if he didn’t get clearance to use a general anesthetic, then he’d do an epidural supplemented with the same memory-blocking drugs Mom had been getting all day.
I could have stayed with Mom all night; the hospital allows that, and I would have, if I hadn’t been nearly as worried about Dad. I went to my parents’ house. Dad was just sitting in his chair, distraught. He is fully aware that his abilities are declining, that mornings are his worst time, and that there was no way he could be at the hospital before 6AM. Again, I offered to make dinner and to stay with him overnight. Again, he refused, saying he’d prefer that I went home to rest before going to the hospital. And again, I deferred to his choices although, as I left, I was thinking that if Mom’s surgery failed, then surely my dad’s heart would fail shortly thereafter.
I was back at the hospital at 5:30 the next morning, having surprised myself by sleeping for a good three hours. Sometime after I’d left the previous evening, a nephrologist not associated with my mother’s nephrologist had consulted with the anesthesiologist and they’d come up with what they felt would be a prudent general anesthesia protocol. I stayed with through pre-op and finally got to meet the surgeon who warned me (needlessly) that Mom had about as bad a closed fracture as one could have, but that he believed he could craft a good outcome.
Mom and I hugged and kissed as best we could through the tubes, then she was rolled off to the OR and I headed for the surgery lobby where I was given a device that would vibrate and blink when my table was ready Mom was out of surgery. I didn’t try to call Dad, instead I read something, I have no idea what for about an hour and a half when the device did its thing. After being told that Mom was in the recovery room, I was escorted to a consult room to wait for the surgeon.
I waited. A nurse opened the door to ask if I’d met with the surgeon; I said no. I waited. The same nurse opened the door; I shook my head. I waited. A different nurse opened the door to say that the surgeon had left the building and I should call his office for the consult. I wasn’t happy, but it wasn’t the nurse’s fault. I was following her back to the surgery lobby when the first nurse came running after us: The surgeon hadn’t left the building. He was in the consult room and needed to talk to me.
Needed.
The surgeon’s first words were that he’d reconstructed a functioning ankle for my mother, one that she would be able to walk on. His next words were that there was a problem. When he’d removed the splint, he’d found a “blister” on her instep, a blister about two inches in diameter that was open down to the muscle and ligaments. He’d cleaned it and medicated it and then had no choice but to cover it back up again. We had to hope it would heal on its own but did not say what would happen if it didn’t.
My heart went into freefall.
Mid-afternoon on the very long previous day, Mom had said that her splinted foot felt like it was on fire. Other times she said it hurt or it was throbbing, but that one time she said it was on fire. I believe that I relayed her words to the RN during her next visit. I know I didn’t make a big thing about it. Hurt, throb, burn—the distinction hadn’t seemed important. Everyone knew she was in pain, what we were all watching was her heartrate under sedation and her steadily declining pulse oximetry numbers.
But that was when things went sideways.
Note to self (and anyone who reads this): When you’ve got a fracture in a temporary splint and swelling is expected. Pain is okay, hurt is okay, even throbbing is okay (so long as everything’s normal at either end of the splint). But burn is not okay. Burn means abrasion. Burn means skin is eroding, dissolving. Burn means you’re going to have a problem.
The surgery was successful. Mom has a mass of metal above her right ankle, but the surgeon delivered what he’d promised: a functioning ankle. And whatever protocol the anesthesiologist and substitute nephrologist concocted, it was successful, too.
The day after the surgery, the consulting cardiologist returned to see how Mom was doing. He went on a tear about how “90% of the time, when I visit a patient in the hospital, they’re there because some other doctor has over-medicated them.” (Honestly, I’ve never seen a doctor that angry.) He commandeered the lengthy list of Mom’s medications that I was carrying around, sat down at the nurses’ station computer, recalibrated everything, and then handed me a new list saying, “This is what she takes. If anyone tries to change it, you send them to me.” Thanks to him and even with all that new metal in her leg (not to mention the four hip replacements), Mom is more alert and steadier than she’s been since she lost the kidney.
Granted, the three weeks of rehab were a drag and Dad caught a bug while visiting her there that had me dealing with simultaneous health crises in separate locations for a few days. Mom brought the same bug home with her after she was discharged from rehab and wound up back in the hospital for another few hectic days with “pneumonia-like symptoms.” But all that was simple compared to the Wound.
The Wound wouldn’t heal. It had developed a “bioburden” short of infection that defied the best efforts of the surgeon and his office techs, two home-health services, seaweed/algal therapy, salicylic acid therapy, and a 24/7 Wound-VAC. Mom worried that the bioburden would become an infection…possibly a MRSA infection, because there was staph in the bioburden. She worried, reasonably or not, that infection would become amputation.
When my mom worries, my dad worries; and when both my mom and my dad are worrying, I don’t do too well, either.
The plastic surgeon who’d taken over from the orthopedic surgeon said that if the Wound-VAC couldn’t induce healing, we’d have to look at a skin graft and gave us a timetable that would have scheduled the graft surgery later this month or early in August. But after only a week of constant suction, he decided there would be no further improvement and no sense in delaying the skin-graft surgery which would take about as long as the initial orthopedic surgery and, like it, would be done under general anesthesia on an out-patient basis.
Or so Mom informed me, because, remember, autonomy. Once they were back together, Mom and Dad declared that they could and would handle their medical issues as a two- (not three-)person team. Initially, they had it all planned so I wouldn’t be “needed” on the day of the surgery. That was more autonomy than I could handle, if only because we were talking general anesthesia again, but without those pesky consults. I hadn’t met the plastic surgeon; I didn’t know if he knew about Mom’s solitary kidney or her heart and lung problems. I found my no-nonsense voice and said that needed or not, surgery was not going to happen without me being there to ask questions.
Mom was embarrassed and Dad started sobbing, because they really did want me with them, they just didn’t want to ask. (Which has seriously shaken my faith, but that’s a problem for another day.)
It turned out that there’d been no consults because the notes and directives from January’s surgery were recent enough to be considered valid and the anesthesiologist—though a different anesthesiologist—planned to follow January’s protocol exactly. In the consult room after the surgery, the doctor was confident that the self-graft would settle in with the help of six days of rest, elevation, and the 24/7 Wound-VAC (and that there would be no complications at the harvest site on Mom’s thigh).
The six days were up on Thursday. The Wound-VAC has been replaced with a pair of Telfa bandages and there’s a sense of relief in the nuclear family. (There’s still one more post-op visit scheduled for next week, but I really think that’s going to be a formality.)
It’s not really the end of a story, more like the end of a chapter. My life has not returned to what it was last September, and it won’t. I’ve gotten into the habit of cringing whenever the phone rings unexpectedly; I don’t see that changing. I’ve caught my balance, though, after months of feeling as though I were falling. Maybe I’ll be better prepared for the next chapter.

10 comments to So What’s New? (catharsis edition)

  • pennyworth

    I’ve been there. You have my sympathies. I wish that they would help.

  • Rosemary

    I’m going through something similar these last 2 weeks with my husband; aortic valve replacement, 4 bypasses and the discovery of a pulmonary fibrosis that no-one knew about beforehand. We followed up with a cardioversion this morning because his heart wouldn’t stay out of afib (atrial fibrillation) no matter the level of meds that were used. So far, so good today.

    My thoughts are with you.

    • Lynn

      And mine with you…

      I hope yesterday did turn out to be a good day and that the cardioversion does its job.

  • WOL

    I’m in your same neck of the woods myself. My dad turns 92 and mom turns 90 this year. He’s functionally deaf and blind, should eat through a tube but won’t and can barely ambulate with a rolling walker. Mom’s healthy as a horse, although hard of hearing. I’ve been a medical transcriptionist for 27 years, and I’m the translater and interpreter — and I can understand these foreign doctors. (Mom has trouble understanding Americans from, like, New York, because of their accents, never mind somebody from India or SE Asia, or such.) It’s hard when the roles become reversed, and your parents, who you looked to for advice, direction and support, now look to you. Knowing “that day” is coming in no wise prepares you for when it gets here, as it inevitably will. Hang in there. The very hardest thing is taking care of yourself first. You have to remember the lesson of the lifeguard and not let the drowning person pull you under. (It’s called “caregiver burnout.”) It’s hard to ignore that little voice that tells you you’re being selfish. But you do have to take care of yourself. I hope your mom and dad have the best possible medical outcomes, and I wish you strength.

  • Lynn

    Thank you for the kind and wise words.

    When I start thinking about how much the world has changed in my lifetime, I recall that when my grandfather turned 80 in early 1970’s, my mom arranged for him to get a personalized birthday card from the President because, demographically, 80 was an outlier in those days. Last time I checked, now you have to be celebrating your centennial to qualify for a special birthday card.

    I’m fortunate in that I’m surrounded by several layers of support (mutual support: we’re there for one another). And I’m learning to say “yes” when one friends suggests that I take some time for myself. You’re right, it’s important and it really helps.

  • pennyworth

    Recovery time is so important. I have given that reminder to several friends. You can only keep juggling all the balls if you are still able to stand up!

  • chondrite

    I check in here very occasionally from CJ and Jane’s blogs. Oweeeee (or as they say locally, auwe!) My parents are also getting older; I’m having to face that I will probably be down a father in the next couple of years. I wish your parents the best, hope for your mom’s full recovery, and she has a terrific kid pulling for her.

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  • Traveller

    Oh my!

    Positive and healing thoughts to you and yours.

    I am glad to read that you have again found your balance. I just second the great advice you have already received: Don’t forget about self-care with all that is happening.

    Peace,
    Clark