It's still our apartment

I need a break from the long-running horror of Stephanie's 2013 hospitalizations — a break she needed, too, but never got until it was over. That story will resume, but today is a more pleasant rumination.

When Stephanie died, I briefly flirted with the idea of moving out of this apartment that we'd shared for fourteen years. The memories were too overpowering. I even thought about leaving Madison, her home town that she had missed so much we moved here in 2004. Stephanie quickly made Madison feel like my home town too, and this apartment had become our home.

Steph died two years ago, and I miss her like it was yesterday, but now I can't imagine moving — because this is still our home. She's still here with me. I don't want to live alone, and when I'm in the apartment, even though I'm alone I don't feel alone.

Stephanie is with me in the kitchen when I'm warming up a platter of soup, because she made the kitchen her territory. It's messier now, because I don't have Steph's high standards, and I've moved most of her cookware and cookbooks to the Shrine, because I don't cook much and it's a small kitchen. So I've changed it a lot, but it's still Stephanie's kitchen, and there's something 'Steph' about being in that room. And there are things I've haven't changed. Her potholders are above the stove. Her favorite soups are still on the shelf. I never use those potholders and I don't care for that style of soup, but they'll be there as long as I am.

She's with me when I check the mail, because her name is still on the box, and because our mailbox is at knee-height. The low mailbox meant that checking the mail was one of the few chores Steph could do from her wheelchair with no real difficulty, so long as we didn't get any packages.

She's with me when I take out the trash, because I walk down a hallway where she did her prosthetic-walking exercises so many afternoons. She tried so hard to walk on that prosthetic, and I walked with her as a spotter in case she went down — which she did only once, when I wasn't there. That's why I always wanted to be there, after that, and that's why she didn't mind.

At the end of the hall, I step out the door to our back-alley. We always went that way out of the building when we were breakfasting at Ogden's, or if we were just walking the neighborhood. We walked the neighborhood so often, so many times, that these days, wherever I am when I walk the neighborhood, there's a Stephanie memory at every corner.

She's with me here as I'm typing this, in the room we used to call the office. For several years both Steph and I had our desktop computers in this room, and now it's where I sleep, beside the desk where she used to surf the internet. I'm using that same desk today, and I've intentionally left a few of Steph's knickknacks on it.

The bedroom — sorry love, I had to change the bedroom a lot, or I would've lost my mind. I emptied the closet, giving most of Steph's wardrobe to charity, and moving a few cherished items to the front room, in the Shrine. The bed is gone; replaced with a single bed since I'll never need a double. I don't sleep in that room any more, but the new cat does. Mostly I avoid that room. It's a little too much.

Stephanie is with me in the bathroom, where her toothbrush still leans against mine beside the sink. Her shampoo is still in the shower. Her disabled-riser seat is still on the toilet. She thanked me for putting in a better shower head, and for adding no-slip stickers to the tub, and maybe it's nuts but I remember that every time I'm in the shower. Under the sink there's a drawer full of Steph's hair stuff and some pills and ointments and girly things, and I'll never clean out that drawer. I kinda like opening it and looking through the effluvia sometimes.

She's with me at the end of the hallway, where our old bedroom is on one side and the bathroom is on the other. There's still a dark horizontal smudge about twelve inches up the wall, where the wheels of Steph's wheelchair bumped against the paint, as she turned her chair around in the cramped quarters of that hallway. Just a bump here and a bump there, but after thousands and thousands of bumps it became a thin layer of rubber from her wheels, now a stripe along the wall. Am I ever going to wipe that smudge away? Never ever.

And I'm never moving out of this apartment, not until I die, because Stephanie is still here with me, and I love that.

Wild night at American Center

This is the long and unpleasant story of Stephanie's amputation, and the complications that came afterwards. Today's entry is part 5, and I've listed the earlier installments below.

A disclaimer: I believe everything I'm saying is true, but I'm old, it all happened years ago, and the medical details were complicated. We barely knew what was going on even as it was going on, so I won't be surprised if I've gotten a few details wrong. I'm hoping that saying so prevents any of the medical facilities involved from suing me.

After all, we were kind enough not to sue any of them, and god knows we could have.

An ambulance brought Steph from UW Hospital to the American Center facility, and after Steph had been checked in, someone from the front desk gave us a tour of the place. Everything seemed to be dedicated to physical therapy, which Steph would need plenty of. She'd need to learn how to get around with only one leg, for at least a few months until her prosthetic leg could be fitted.

Stephanie, of course, very much wanted to see the American Center's in-house restaurant, hoping she'd be able to eat at this new hospital — she'd barely been eating at her previous hospital. An employee showed us the way to the cafeteria, and Steph thought the chicken Parmesan looked good so I bought it. We said thanks to the staff person who'd brought us, and I wheeled Stephanie to a table. She took a whiff of the food and said "Maybe," and then she took a bite and said, "No."

It was obvious to both of us that Stephanie's distaste for hospital food was going to be a problem, and yes it was, and soon, but we wouldn't have been able to guess how soon — and how terrifyingly — that problem would come to a crux.

The staff settled Steph into a room, and she asked nicely whether I could stay the night with her, as I always did when she was hospitalized — Steph in the bed, and me in a reclining chair. As usual, they said that wouldn't be a problem. Someone came by and explained what Stephanie's daily routine would look like at this facility — breakfast, then physical therapy, then a break, then lunch, followed by more physical therapy. Then it was dinner time, and Steph ordered a meal off their menu. So far, it was a hospitalization like any other hospitalization.

When dinner arrived, it was inedible, which was routine and expected, but Stephanie hadn't had a genuine meal's worth of food in days. I volunteered to run out and bring back something she could eat, but Stephanie thought that wouldn't be politically wise on her first night at this new hospital.

She might have been right. Nobody says it out loud, but you do have to play some politics in a hospital setting, and me running out and bring back a restaurant meal to-go might have earned her a scolding. But I still wonder what would have happened if I'd driven to Denny's and came back with a meal Steph could eat.

We talked and watched TV, but after a while I stopped paying attention to the TV, because Stephanie was saying strange things. She started by saying that she thought the hospital was trying to poison her, that there was something intentionally toxic in the food. I took it as kidding at first; just another joke about horrible hospital food.

But she stayed on that subject for far longer than it could be considered funny. It seemed obvious that the lack of food was making Stephanie delusional, so I broke out some snacks we had packed. We always had snacks at the ready when Steph was hospitalized, because the food was always a problem, at every hospital.

Stephanie tried a few different fruits and candies, but she would only hold them in her mouth, she wouldn't swallow. Meanwhile, the things she was saying became weirder and weirder — "I don't think I really have kidney failure, they just like to torture me with dialysis." "Is it too late to have my leg reattached?" By this time I had already buzzed for a nurse, but it had been ten minutes with no response.

I asked Stephanie to wait, and darted out of the room to the nearby nurse's station. There was nobody there. I looked down the hallway in both directions, saw nobody. I can't say what time it was, but it was after dark — maybe 9PM, maybe 1AM.

OK, I was trying to stay calm, maybe there was just one nurse on duty and she's in the ladies' room? I found a piece of paper, scribbled "Emergency in room 105", and walked into the empty nurses' station, and left the note standing up between keys on the station keyboard.

Then I went back to the room, checked on Stephanie, and she was talking to herself before I opened the door — talking about a plot to kill her. She was also trying to get out of her bed, something you and I wouldn't think twice about, but remember, Steph was a one-legged woman who hadn't yet been taught how to do anything at all on just one leg. If she tried to get out of bed, she would topple to the floor. I buzzed again for a nurse; no response.

Stephanie was still talking about the doctors who were trying to kill her, and still trying to get out of bed, and I asked her as nicely as I could, using every line I could think of. "Please, Stephanie, trust me, I won't let anyone hurt you." "Steph, please please please stay in bed until I can get a nurse in here." When she promised that she'd stay in bed for five more minutes, I ran out of that room and down to the nurses' station, but it was still empty. My note was still on the keyboard. It had been ten minutes since I left that note, and at least twenty minutes since I'd first buzzed for a nurse.

Hell with it, I said to myself, and started exploring the hospital, knocking on any patients' door if there was light coming from inside. "I need a nurse!" I shouted. "I need a doctor!" This seemed to be a hospital with only patients in it — no staff.  And I couldn't continue looking for hidden employees; I had to get back to Stephanie.

True to her word, she was still in bed, but as soon as I entered the room she said, "Oh good, it's Doug, so now we can escape this place, right?"

"I'd sure appreciate it if you'd stay in bed a little longer, love." I offered her some more snacks, and noticed that she'd spit out her earlier fruit. I buzzed again for a nurse, and then I spotted the room's phone. I picked it up, dialed '9' for an outside line, and called 9-1-1.

Steph, meanwhile, was still asking me to help get her into the wheelchair "so we can escape this place." In my other ear, on the phone, I tried to explain to a 9-1-1 operator that I needed an ambulance sent to a hospital, which as you might guess, isn't the way such things usually work. When I somehow convinced 9-1-1 that I wasn't a prank call, they said paramedics were on the way.

Then, of course, a woman knocked on the door, and came in holding my note. I started telling her what was going on, but she interrupted, correcting me because I'd called her a nurse, when she was only a nurse's assistant. "Can you please get us a nurse?" I said, "Or better yet, a doctor?"

"I'll be right back," she said, and turned and ran down the hall. She returned in a few minutes, with an older woman I hoped was a doctor or a nurse, and I again started to explain. "My wife has hardly eaten anything in a week, and she's saying crazy things, and I think she's delusional, and we need to get some food into her." The lady said she was a nurse, but she moved slowly, which I guess is what you'd want — she can't be panicking like I was. She took Stephanie's pulse and blood pressure, and said that a doctor had been paged.

Then the ambulance arrived, which wasn't helpful after all, because our nurse seemed to be the only medically-trained human in the building, but instead of taking care of Stephanie, now she was answering the paramedics' questions. The nurse had, I think, decided that she had the situation under control — spoiler: she did not have the situation under control — so she sent the paramedics away. I should've argued more, I think now; back then I just wanted someone to do something.

Stephanie was mostly reasonable when the nurse was in the room, but every time the nurse stepped out and it was just me and Steph, she'd be talking again about escaping the hospital where they were, she said, trying to kill her. I tried to talk to her with logic, which was always the best way to approach anything with Steph.

"Where could we go, Stephanie? I don't even know how we could get you into our car, but if we escaped this hospital where could we go? We can't go home — there are steps to climb, and you're in a wheelchair. And if we do go home and somehow get into the apartment, what do we do when you need to go to the bathroom? Can't you see, babe, you need to be in a hospital, where they can take care of you, and teach you how to take care of yourself until you get the prosthetic leg?"

It was futile, though. She would agree with the logic, but a few minutes later she'd forget that she'd agreed, forget the logic, and again ask me to help her escape the hospital. Meanwhile, the nurse came into and out of the room, but near as I could ascertain she wasn't doing anything to help Stephanie. I'll say now that she was of course limited by law in what she could do, but at the time I wasn't so understanding as I am all these years later. I was rude and angry and demanding and terrified.

I remember clearly that one of the things I said was, "It's been a fucking hour and a half since I buzzed for help in what's obviously an emergency, and still we have only a nurse and a nurse's assistant. Is there a fucking doctor in the building?"

And that's when the nurse explained that, no, there wasn't a doctor in the building overnight or on weekends, but that a doctor had been paged. Maybe that's something they should've mentioned before Steph checked in? I mean, we're not (as the cliché goes) in Bumfuck, Iowa. We're in a big city, in a big building that at least looks like a hospital. Where are the doctors?

The nurse restrained Stephanie, literally tied her down so that she could no longer try to get out of bed, which allowed the nurse to occasionally leave the room. It was necessary for the nurse to leave the room because, I now understood, she was the building's entire medical staff for the overnight shift, and she needed to check on other patients. Stephanie, meanwhile, continued begging me to take her out of this hospital, but she was mistaken; this clearly wasn't a hospital.

The doctor on-call finally arrived, perhaps an hour after being paged, more than two hours after the emergency began. I tried to explain what seemed fairly obvious to me — that Stephanie was delusional due to a combination of lack-of-food and the enormous stress of having her leg amputated while she was still a young woman. I never got a sense of whether the doctor at American Center agreed or disagreed or had any opinion at all on the matter, but she did call for an ambulance, and Stephanie was transferred back to University Hospital in the middle of the night. She had stayed at the American Center for only a few hours, but they were memorable hours.

Luckily, they were memorable only to me. After a few days back at the real hospital, Stephanie barely seemed to remember the American Center adventure at all, and several times she asked me to explain to her what had happened. That was difficult, too.

In the next installment, I'll try telling what happened at UW Hospital — which was only the third stop in Stephanie's tour of six medical facilities in the aftermath of her amputation. The whole story was wild, and I'd call it unbelievable if I hadn't been there at her side to see it all.

I had never before seen Stephanie actually out of her mind, and I never saw it again, and it certainly isn't pleasant remembering or describing it. But you know what? As bleak as it got, through Stephanie's 5+ months of confinement at four different medical facilities, the one and only time when Stephanie wasn't courageous and smart and absolutely honest with herself about her situation was that single night of delusion at the hospital-that-wasn't-a-hospital.

And even when she was delirious in the middle of the night, she was always polite. She never once cussed at anyone, and she always listened to what I said, and I could reach her by simply talking to her. Even at her worst, then, Stephanie wasn't capable of being mean or stupid or rude.

Next up: Back to UW Hospital.

The aftermath of the amputation

We were a little surprised to learn, after Stephanie's left leg was amputated, that what remained of her leg above the knee was actually called the stump. That word sounds like slang, so she thought that there must be a more 'polite' term for it, but nope. Doctors sometimes called it the 'distal', or 'remnant', or 'residual limb', but even most medical professionals just called it a stump.

Stephanie's stump healed slowly, but without complications. She had to stay in bed, and had to deal with all the things she hated about hospitals — being poked and prodded at least hourly (often more frequently than that) by masked and gowned people, like she was radioactive; long waits for things that really can't wait, like a bedpan; answering the same basic health questions twelve to twenty times daily; and of course, the food.

You hear jokes and maybe tell jokes about hospital food, but with Steph it wasn't just a joke. I've explained this before, but it's about to be vital, so I'm going to explain it again.

Even when Stephanie was in perfect health, she only ate food that tasted good — and it wasn't a matter of choice. She wasn't turning her nose up because she wanted something better. She had a very delicate appetite, and if you put food in front of her that didn't taste good, it would shut her appetite down. For lack of a better way to describe this, think of it another of her medical conditions, though it was never diagnosed or treated.

At home, her delicate appetite wasn't usually a problem. If she didn't care for the food on her plate, I'd eat it and she'd prepare something else. In restaurants, if she was disappointed with her entrée, again, I'd eat it, and when we came home she'd find or prep something she could eat.

In the hospital, though, there's no easy alternative to hospital food. Everyone eats it, and everyone complains about it. Stephanie often couldn't eat it, and with no alternative, that means she often didn't eat.

Some meals in the hospital were palatable enough that Steph could eat them, but most weren't. After a streak of several inedible meals, her appetite shut down even more than it usually did, so that even a pretty good meal made her nauseous. This happened several times, during her post-op stay at UW Hospital.

I ran errands, bringing Stephanie non-medical meals from the hospital cafeteria, or sandwiches from a nearby sub shop that she usually liked, or a filet-o-fish and fries from McDonald's, or carry-out linguini from an Italian restaurant, or yogurt from the grocery — anything Steph thought she might be able to eat. Sometimes she ate it, but often she had no appetite and couldn't.

Over her two weeks recuperating at the hospital, she ate less and less. By the end of her stay she was eating perhaps one meal's worth of food every two days. There was always food un-eaten on her plate. We felt it was worrisome, and spoke to the doctors about her lack of appetite. They didn't think it was a serious problem, or perhaps we just didn't explain it well enough.

Every time we described all of this, during the crisis and afterwards, to medical people or just to people-people, even to friends and family, nobody quite understood, so let's say it again:

Steph wasn't refusing to eat. She wasn't holding out for access to Twinkies. She wasn't eating because she wasn't able to eat. When she had no appetite, if she tried to eat something anyway, she'd barf it up. Many times, she looked at the food and asked me to take it away; the sight of it sickened her.

And yet, the ordinary schedule for post-amputation recovery rolled on. Her stump had healed enough that Steph was due to be transferred to a different hospital, one that specializes in physical therapy, where they were going to teach her how to get in and out of her wheelchair, among other things, and work on strengthening her remaining leg.

This next hospital was called UW Health at The American Center, named for the sprawling industrial park where it had been built, on Madison's far east side. Reading the admission brochure, Steph and I giggled at how often they used the word 'holistic', and she said, "I hope this is a real hospital." We thought that was funny, but in hindsight it wasn't.

I don't know the legal or linguistic definition of 'hospital', but you'll notice that this facility is called UW Health at The American Center — the word 'hospital' isn't part of the place's name. The American Center has doctors only during the day. With no MDs in the building overnight, it's not what I would think of as a hospital. It's more like a clinic, where doctors work 9-5 but patients spend the night.

We didn't know that, though, not yet, but man o man, we were about to find out.

Next: All hell breaks loose at the American Center.