When you enter the hospital from the fourth floor parking garage, there’s always only one song on the Muzak: a flute-only version of “From a Distance”. Whenever I enter or leave the hospital, it gets stuck in my head.
I think it’s supposed to be comforting, but when your husband is lying in ICU with a ventilator doing his breathing for him, they are dark and lonely lyrics. God is watching this from a distance? Because the world looks blue and green from a distance and it doesn’t look like we’re at war and it looks like there is no disease? And Esteban is lying in a goddamned bed, terribly riddled with sepsis due to his stomach getting nicked with an instrument during surgery, requiring a second surgery that sent him into the ICU?
Fuck that. Fuck flutes. Fuck that song. Fuck Bette Midler. Fuck everything.
Over a month ago, we had a fairly normal Saturday. I woke up because our new dog had some kind of massive poop incident in her crate, necessitating two hours of hazmat duties on my part. To put that behind us, we went shopping and then went antiquing in part of our quest to find the perfect midcentury modern/Danish credenza to use as a TV stand so that we can get rid of our ridiculously old television. We had a late lunch and then a very light dinner. Esteban had an upset stomach so he didn’t eat much.
Around 1 am that night, he woke me up and said he hadn’t gone to bed because his stomach ache had turned into stomach agony. He was white and shaking and couldn’t sit down without groaning. At the emergency room, they gave him drugs and then after six hours, were ready to release him when the surgeon took a look at his tests and said “Wait one minute.”
They then pumped his stomach continually for the next 100 hours and wanted to split him like a trout and try to figure out what was going on with his stomach. Then they did a CT scan and found out that his massive hiatal hernia had now allowed his stomach to move up through his diaphragm and it was entirely up in his chest cavity, nestling up to his lungs.
Right. We transferred to a Milwaukee hospital with a gastro specialist. By then, the stomach pain had stopped (because the stomach had untwisted). After two days there, the rock star surgeon decided that he wasn’t an emergency situation, so he’d send us home with instructions not to eat anything hearty and come back in two weeks. We went home and ate a lot of noodles and mashed potato meals. We went back to Milwaukee and prepped for an expected three days in the hospital. The surgeon spent six hours putting his stomach back into position laparoscopically and then repairing the football-sized sac and giant rip in his diaphragm. The nurse called down into the waiting room and said that the entire surgery went perfectly. The day after, he had a test to ensure that his stomach was okay (the test was all clear) and he got to eat a little and drink a little. He was cranky after 24 hours, which was to be expected, and we were set for release the next day.
However, the next morning, he had pain. Bad pain. His vitals were normal, so they were convinced he was constipated (a pretty typical side effect of anesthesia and also the pain drugs he was getting), so they gave him oral laxatives and instructed him to keep drinking more water. Then he stopped peeing. After almost 20 hours of pain, the night nurse and I convinced the on-call that something wasn’t right and they ran blood tests, which revealed that despite picture perfect vitals, his kidneys were shutting down. They ordered another GI at 4 am, which showed his stomach was leaking into his peritoneum and the resulting sepsis was shutting down his organs. They rushed him into the OR very early Sunday morning.
We’ve now been in the hospital for three weeks. Esteban spent about 24 hours on the ventilator and then fought for his life, battling massive sepsis and a dance with septic shock. They pushed an additional 30 litres of fluid into his body to flush out the poison.
He almost died.
I haven’t found concrete mortality rates for septic shock. I’ve seen anywhere from 40% to 70% mortality rate, but I think that higher number is probably at risk populations, like the elderly and very very young. Esteban is strong. Esteban is healthy. Esteban quit smoking a month ago, which also greatly improved his lung quality and helped him survive. Esteban’s odds of survival were never worse than 50/50.
Regardless, those odds are pretty awful.
On Monday, when the “almost died” in that preceding sentence was a “might or might not die” I was trying to be strong. I had slept the previous night in a conference room in the bottom floor of the hospital (because family members can’t sleep in the ICU) and the night before that had been spent in a chair next to Esteban’s bed and/or arguing with the on-call about running the additional blood tests. I was trying to be strong and I was failing.
It was like trying to walk up a hill with a bucket filled with too much liquid. I would be doing something completely normal and then I’d start crying. If anyone looked at me the wrong way, I’d cry. If someone tilted their head, blammo, crying. If I thought too hard about the lyrics to “From a Distance” and about how far away God was, my head started leaking.
I was so mad. I was so mad at these people who were supposed to be exceptional, people who we had chosen particularly because they were awesome, and they had all fucked up. I kept asking questions and pushing them to explain their decisions, kept suggesting other possible causes for his symptoms. I started to feel like Cassandra, predicting the causes of symptoms and snafus, while the doctors kept poo-pooing the annoying wife with all the stern looks punctuated by tears. I don’t blame them. I wouldn’t have listened to me either.
Still. He almost died.
We’ve been here for three weeks. We’ve been here long enough to get to know all of the nurses. I call one of the surgical residents by her first name now, something she says “You’ve earned it” since she’s usually the one waking me up during their 6 am rounds (I have been sleeping in a chair next to his bed). The staff in the hospital cafeteria now know me enough to question why I didn’t get an oatmeal cookie (because I’m trying to cut back on sugar, thanks).
Esteban is getting better, very slowly. After three weeks, his test results still agree that he’s undeniably “sick”, but the same word that we use to apply to common colds is hardly adequate to what he’s been through and continues to fight. Sepsis takes a long time for the body to eradicate completely. He’s just no longer in critical danger of passing away.
He almost died. The flute still reminds me that God is watching us whenever I walk out into the parking garage.
It’s a cliche but you really do get to understand who your true friends are during times of crisis. My coworkers sent a bouquet of flowers in the shape of a puppy I named Grover Cleveland, the mascot of room 27. I had four offers from friends who were willing to get on a plane and fly to Milwaukee to hold my hand. Esteban’s best friend Markus actually did get on a plane and come out here for several days while he was in ICU. Several of our friends have sent gifts of food to Esteban’s nurses, which has resulted in them treating us like royalty on the ward. Mopie sent me a cache of Candy Crush Saga lives to keep me occupied with random distractions. My coworkers are forgiving an obscene amount of absence and also, covering nearly all of my day-to-day tasks without even batting an eye. We are incredibly fortunate.
And then there’s the other side. Some people are just not present. I’ve learned that “Please let me know if there’s anything I can do” is not actually an invitation to ask the speaker to do something, but instead code of “I’m going to say this thing to make me feel better but I actually don’t want to do anything and will turn down any of your suggestions that are inconvenient to me or involve driving two hours.” My family, about 120 miles away, have yet to make an appearance or even send a card (although my sister and niece did record a video on her husband’s phone for Esteban, which was nice).
Sometimes I wonder if people just don’t realize how ill he actually is, or maybe they’ve already given up on us. Sometimes I have anger that I know isn’t appropriately placed. I get angry really easily and then I feel guilty. And then I don’t know what I feel.
Every day is something different. Every day is a fear of test results, worry that the white blood cell count will stop its slow descent toward healthy and bounce in the other direction. Every day being sick starts to feel more normal. Every day, we’re feeling the support coming from near and far.
I’ve alternated between feeling extremely alone and feeling extraordinarily supported and loved.
I’ve had a room at Kathy’s House for almost a month. It’s a non-profit facility and they’ve been kind enough to let me crash and use as needed, which is nice because most of the time, I have been sleeping in a chair in the hospital room and then cut out for about an hour to run over to the house and take a shower and change clothes. They don’t charge me for my room but do ask for a donation, whatever we can afford, typically about $75 a day. If you are looking for a worthwhile cause to support, Kathy’s House has been an amazing resource and one that has absolutely eased the stress of being here. You can even donate toward my stay if you say it’s to support Wendy in room 31.
Last night, June stayed here in Milwaukee with us. We left the grounds of the hospital for a rare meal, and talked with the waitstaff about why she’s seen me twice in four days. I explained that one of my favorite restaurants just happened to be the most convenient eatery that wasn’t the hospital cafeteria (a lucky coincidence). And they said that when Esteban is out of the hospital and able to eat food again, he could go to Maxie’s and dinner would be on them.
Even through the worst nightmare of our lives, I’m still surprised and delighted by how genuinely good people are.
That song is wrong. Things don’t look fine from a distance. They don’t look fine at all. I’m still trying to work all of this out in my head myself.