Four Eyes, page 14
“So, what’s the latest?” Amy asked. “And we’re stopping at Good Times, by the way, our treat.” She smiled at me from the front seat; Good Times was a favorite.
“Ha-ha, okay, great,” I answered before a long sigh left my being. “Well, they gave her another really strong antibiotic that comes with some gnarly side effects, including possible hearing loss and/or kidney failure. But it was either that or she would die from the infections making her septic. She told my dad that she still wanted to fight, so we’re fighting. But … she was on the drug for five days; her infections started to improve, but her kidneys stopped working. They are testing them now to see if they work at all or if her kidneys are shot.”
I heard myself talking as if I were on another planet. It was so distant, so rote, so … emotionless. What was happening to me?
“We have a family meeting today to talk about next steps. I guess she has some options for surgeries, but I’ll find out more tonight. I don’t know anymore, guys.”
“Wow, Lish,” was all they said. And all they had to. It was dripping with empathy, and I knew I wasn’t alone.
CHAPTER 57
September 26, 2012, 4:57 P.M.
ONE OF MY mom’s favorite nurses, Ryan, was working when I came around the familiar corner leading into the Cardiac ICU, and she hugged me a big hello. She led me to my mom’s new room, back to a windowless one with more gadgets for people who were as sick as she was.
There were two doctors already in there, a cardiologist that wasn’t Dr. Stevens and a generalist who had just graduated from the University of Michigan. My dad was currently talking with him about his alma mater, one of my dad’s favorite topics. The young doctor didn’t quite share the spirit. The family conference was starting in three minutes. Experts representing each body system currently being treated had arranged for a ten-minute care consultation to talk with one another about next steps.
The generalist was humoring my dad and, soon enough, my dad gave up. He looked really tired.
“Hi, kid,” my dad side-hugged me, resigned, staring at my mom. “Welcome back.”
“Hi, Pops,” I said. “You ready for this?”
“Sure,” he said, not looking like his usual self, brimming with a million questions.
“You doing okay, Dad?” I asked.
“I’m just so tired,” he said. I believed him. He looked terrible. I was certain he’d barely slept since I’d seen him a month ago. His skin was paler, and his hair was a mess. I knew it was awful, but this was the first time it hit me just how hard this must be on him.
“I bet.” I answered. There was nothing else to say.
The doctors filed in sporadically over the next few minutes and surrounded my mom, asleep in her fancy sand bed. A GI doctor, the infectious disease doctor, a lung doctor, and the newest addition and last to arrive, a kidney doctor, or nephrologist. Another new word. Without any ceremony, they began. The infectious disease doctor went first.
He was a short man of Vietnamese descent and spoke with a thick accent. He had been with my mom since she had been readmitted and had been consistently debriding the wound without any improvement.
“I think the only move left for the wound,” he started, “is to do a muscle flap surgery—take some healthy skin from her leg and attach the new skin to the sides of the sore, hopefully generating more healthy cells that will then grow together and close the wound. Her white blood cell count is much better, but it will get worse if we don’t act soon to close the wound.” He finished calmly and looked to his right as if passing a virtual baton.
“Respiratory thinks she is slowly dealing with chronic obstructive pulmonary disease, COPD, which is making breathing harder for her and taxing her heart. She will need oxygen consistently from this point forward,” came this doctor’s recommendation. He held up a breathing device in his large left hand and shook it against the air. “And a lot of this,” he said, referencing the bizarre-looking device that looked like a mini version of the carnival game where you hit the base as strong as you can to try to ring the bell at the top. “She has to blow in this every day, working to get this ball to the yellow line in order for her lungs to grow stronger,” he explained as he pointed. “We are doing medication treatments to relax and open up her airway, but they can only do so much.” He finished by replacing the device on my mom’s tray table with a snap. He patted the doctor next to him on the back. “Take it away, Doc,” he said casually.
Without missing a beat, he did. “Digestive team thinks her GI tract is shut down because of everything else. We are anticipating GI function to resume once the antibiotics are at a reasonable daily dose, the infection is totally cleared, and cardiac output increases. However, until all of that happens, Digestive is at a standstill.” He was a tall, slender man with deep blue eyes and a compassionate smile. I wondered how many times a day doctors like him did things like this. And how invested they could afford to get in their patients while caring for their own mental health.
Cardiac was next; I recognized this doctor but couldn’t remember his name. He was in his late sixties with a head of gray and had looked after my mom a few times during her various stays. I liked him. He was quiet, smart, wise, and kind.
“She needs to get well with the wound closure first so that we can get her upright and back to gaining strength for her heart to heal as best it can. Congestive heart failure is present, but treatable. I haven’t heard anything yet that sounds like a sure threat of death if we take the right next steps and work off one another in the proper order. Her heart is resilient, and her ejection fraction has moved up to 35 percent. If she can get through these infections, her heart will get stronger. I am a strong proponent of doing the muscle flap surgery to get everything back online.”
“I disagree, doctor,” the U of M grad began. He was no more than thirty-two and gave off a wave of arrogance. “She is so compromised that her body is going to prepare itself to only fight one thing. She won’t last through the surgery; even if she does, she won’t have the energy to fight anything else off. She will die either way, but if you put her through surgery, it’s just one more round of pain for her to experience before passing.”
My insides were frozen again, and I couldn’t move, just stare. He just said it. She will die. She’s going to die. She will not live anymore. I can’t believe he just said it like that. Was he right? My head pounded and swirled.
“Forgive me, Doctor,” the cardiologist replied, “but I have been doing this a long time and have seen many scenarios play out in many ways. I can tell you that if you proceed, her heart will recover. There is still work to be done here. She is only sixty-one years old. There’s no need to quit right now,” came his sharp rebuttal.
“I strongly disagree,” the young grad fired back. “She is suffering. Why prolong it? Don’t do anything; let nature take its course. Let her go.”
“He’s got a point, actually. She has been through so much, and more interventions may just lead to more issues. I would let her go too,” the GI doctor seconded out of nowhere.
The cardiologist sighed. “Ultimately, it is up to the family; her husband has the power of attorney in this case,” he said. “Do you know what she wants?” He kindly looked up at us.
“Yes,” my dad said. “She wants to live.” My dad finished, looking right at the generalist. “I am the last person who wants to put her through more pain and suffering, but she wants to live. She has two kids and a grandson and a whole family. I don’t think we should go to any extreme measures to save her if something goes wrong during surgery, though,” he presented his caveat. “I don’t know that she could take anything more to her chest.”
I looked at him, full of rising anger. This was something I had never considered, and everything in me wanted to fight him on it. She wants to live! my head screamed. Let’s do whatever it takes to make that happen! Why are we standing around her bed debating her life like a ping-pong match as if she’s in some drugged-up dimension where she can’t hear us?! Let’s do something! But what came out was “I think we can talk about that later. But overall, she wants to live, so what can we do now?”
There was one doctor left to speak. I nodded his way. He had remained silent this entire time. Her kidney failure was the latest finding, and I was eager to hear what he had to say about that.
“This is a complicated case, no doubt,” he started. “She has got a lot going on, and I think if we could get her into dialysis today and tomorrow, we could get some of the toxins out of her blood, some of the accumulated fluid off her, and reassess where she’s at for the potential of surgery. The more medication she has in her, the more she will need dialysis to filter it out. We’ll need to add dialysis to her schedule at least every other day, but for starters, for the next two days. I say let’s try this, then discuss surgery.”
I liked this guy. His name was Dr. Simon, and he was a tall, older man with gray hair and a very slender body. He wore a white button-down shirt with a pink tie. He seemed smart and practical. I liked his approach.
“What about food?” my dad asked. “She hasn’t been getting nutrition, and without it, none of this sounds like it will go well.”
“I think we can try IV feeds of TPN, if we are going to proceed,” the cardiologist offered. “That way we can bypass the GI tract for now and get it directly into her veins.”
My dad and I nodded. My Aunt Patti had been asking for weeks for TPN, or total parenteral nutrition, which brought nutrition directly to my mom’s blood rather than needing to go through her digestive system. She had seen it work wonders in babies in her work. Finally, it would happen.
The final round of discussion ended with two votes for letting her go and four votes to intervene, none of which were my mom’s. How quickly voices can get lost in this crazy medical world, I thought. A plan slowly developed to work out a surgery to knock out all the things she would need: the muscle flaps of skin to close both the chest and bedsore wounds effectively; an ash catheter implanted underneath her collarbone that would be her dialysis port moving forward; and, after a lot of discussion, a colostomy to reroute any feces that might interfere with the healing of the bedsore, due to its location.
It was a tall order. And one she would enter under a “do not resuscitate” order. Deep down, I knew my dad was right about that. She couldn’t sustain chest compressions if she were to crash. The doctors left, and my dad and I walked down the hall to talk further. His shoes remained untied.
CHAPTER 58
October 3, 2012, 11:57 A.M.
SURGERY HAD BEEN delayed until today. The original date was three days ago, but it got pushed back by the anesthesiologist as they were on their way to the operating room. His gut was telling him that she would not survive the anesthesia with her heart so weak, and that she needed more dialysis before he would feel comfortable anesthetizing her. He was full of apologies to us, but firmly stood his ground that she would not make it through the surgery if we proceeded now. I was grateful for his discretion.
My mom had her first round of dialysis that afternoon, after they placed a Quinton catheter into her neck to use as a port. This was the most temporary catheter available; it would be replaced by the ash catheter in surgery. It was quite the contraption protruding from her neck, and at first sight, I was surprised that I didn’t think twice about it. It was becoming normal to see her with tubes and contraptions, and I was disturbed that this didn’t bother me more. She looked swollen and puffy, like she was having an allergic reaction to something.
Dialysis was on the fourth floor, in its own hallway and wing, and the dialysis techs rolled her fancy sand bed right up to the machine in the dialysis room while she slept through it. The process filtered all the blood in her body and cleaned it seventy-two times, I learned. After three days in a row, they had removed six liters of fluid from her body. She looked it.
I remembered donating plasma in college, and the feeling of the blood reentering my body after the plasma had been filtered out was so cold. I imagined dialysis was similar to that and felt for my mom. I was at least paid for donating plasma. I was glad she was sleeping through most of these days. I reflected on how long it had been since daughter lens had been out and made a mental note to check in with her later.
To tax her heart less under anesthesia, the doctors decided to split up the surgeries. Today was colostomy and chest flap day. The anesthesiologist had agreed that her heart would make it through these two procedures. However, we were embarking on a totally new journey with the colostomy surgery, and a bag we would have to care for, or rather my dad would have to learn to maneuver. I was still fighting to find the boundaries for myself amid the caregiving role, but I wanted to draw the line there.
Seeing my mom this way was already a tremendous knock to my childish belief that my parents were invincible, and watching my dad suffer watching her suffer was another level of hard. This wasn’t supposed to happen. They were my parents.
My dad was starting to walk slower and needed more breaks to catch his breath. I was beginning to get very worried about him and the toll this was taking on him. He struggled with depression his whole life and was prone to severe depressive episodes. These days he was always exhausted, could never catch up on his rest without sleeping pills that kept him drowsy for days, and was growing more and more pale. He was falling asleep on my mom’s bed daily, head on his hands, and not eating on any kind of schedule. I started to beg him to please talk to one of the cardiac nurses we had come to know so well, just to check in. He refused.
CHAPTER 59
October 5, 2012, 5:34 P.M.
AUNT PATTI HAD flown back in to be with us for my mom’s second big surgery day. It was scheduled for the 8th, and my mom would have the muscle flap surgery to close up her bedsore and the ash catheter placed under her collarbone. Aunt Patti was such a welcome relief.
My mom was somewhat awake and took comfort in my aunt’s presence. It was getting harder for her to live in the ICU, however. Between the pain of the bedsore and the beeps and buzzing of the medical circus surrounding her bed, she was struggling to relax. Some nights were more painful than others, and the nurses reported that she woke up screaming a few times from bad dreams and didn’t know where or who she was. This behavior had increased over the last week or so, and I decided to get crafty to help calm her environment down some. Daughter lens.
I bought a flat, white bedsheet, found some of my mom’s favorite fabrics in her collection in the basement, and cut out some leaf-shaped patterns. I glued the leaves all over the sheet, and the vibrancy of her taste for color instantly came alive. I rounded up a bunch of pictures we had of family and friends and pinned them on the sheet with safety pins. I was hopeful this would bring her some peace when those moments of fear gripped her. I took it to her room and, with permission, hung it on the wall she stared at when she was awake. We were all in need of a mood shifter, and this delivered a small slice of just that.
My dad continued to worsen, and each day I asked him to please talk to someone. He finally caved and scheduled an appointment with his general doctor for the following Monday. Thank God. The more my dad slept lately, the lonelier I got. Mat was at work, and most of my friends had moved from the northern Colorado area south to Denver. I would call Courtney and Kelly from grad school regularly, but most days I craved in-person connection, and yet had no energy for it. I could feel my sadness increasing and my depression sucking the color out of my world more and more each day.
When Aunt Patti arrived, I was elated to have another person who “got it.” She understood my mom so well and had known my dad forever. She was someone with whom I didn’t have to explain anything. Plus, she knew the medical world and could translate when things didn’t make sense. Spending time at Aunt Patti’s house when Mat and I were kids was simply the best. Mat would play ambulance with her and “fix” her up with blankets and towels as bandages, and she ever so gracefully let me “do her makeup,” which was more like me drawing all over her face with lipstick.
My mom was recovering well from the colostomy and the chest flap surgery; finally, things were starting to look up for her. At least for this moment. Her digestion had begun to process some things very slowly, and she was feeling much better with dialysis. These were very slow steps, but celebrated nonetheless.
My individual practicum class was meeting in an hour, and I was going to Skype in for the first time from the hospital. I set up a corner of the room to hopefully have some privacy and got into my gown and gloves, ready. Class began, and almost instantly my mom’s monitors went off, alerting the nurses. Two of them came in to check on my mom, and with more voices came more distraction.
I realized how crazy all this must have looked on camera and confirmed that thought with a glance downward to see myself on the screen covered in a thin blue paper gown and blue latex gloves sitting in front of a bunch of tubes connected to machines, with people humming around my mom like birds. I looked like Scientist Smurf. The room saw more traffic in the hour I was in class than it had all day, and I couldn’t control any of it.
CHAPTER 60
October 6, 2012, 10:35 A.M.
MY DAD WAS up early and off to the hospital, which meant he hadn’t slept well the night before, if at all. He had taken advantage of my Aunt Patti’s visit by making his daily schedule hours shorter than usual and coming home to sleep.
“Mat, I think something’s wrong with Dad,” I said into my phone on the back deck. “He’s really tired all the time, super depressed, not eating well, and breathing heavily. He’s getting spacey and taking forever to walk anywhere, but he refuses to get checked out until Monday. Still with his laces untied too,” I vented. “What do we do?”
