When Mom and I arrived at Dad's shared room before 7:00 a.m. on Tuesday, March 29th, he was already awake and reading. He admitted he had read and re-read the same paragraph several times and still couldn't tell us what it said. He wasn't making headway in his novel and welcomed our company. The night had been full of nurse interruptions, as well as interruptions because of the nature of having a roommate and him being on the bathroom side of the room. Making things less comfortable for him was the fact that Dad's was "NPO" that morning, which means he wasn't allowed any liquids or food, including water. His pneumothorax procedure was scheduled for 11:45 and his lips and tongue were already dried out. I found one of his little green sponge-on-a-stick thingies, omitted the lime flavoring, and offered his mouth a little sponge bath. He wasn't impressed, but it admittedly was relief. I also stole Mom's lip balm out of her purse and worked over his drying out lips.
After sitting with Dad for only a few minutes, it became obvious to us that his breathing had become more labored overnight, despite the cannula offering him sips of oxygen with each breath. While a few short hours before he would lose his breath by putting out slight physical effort, he was now working even harder just to lay still and carry on light conversation. I found myself yearning for the lung draining procedure to hurry up and offer him relief.
At 9:30 a.m. a transport team came to take Dad to Ultrasound. The updated look at his lungs would determine which lung was under the most duress. The right lung proved to be the most dire in need. Because of the risk of puncture or collapse, the doctor wanted to wait and see how the right side recovered before attempting the left. If Dad was nervous, he didn't volunteer it. I did get him to admit he was looking forward to being back in his room, breathing better.
The procedure was performed about two hours earlier than they had scheduled him for it. I could not have been more relieved for him. Dad had started making it a point to discover and use the first name of everyone who touched him. I finally caught on to his commitment to this practice and did my best to help him keep track. Yolanda was the tech responsible for the ultrasounds that determine needle placement prior to each pneumothorax procedure. She would be present all three times, but I'll get to those other two stories later. On this day I appreciated her diligence in the comfort of my dad as well as her patience with my Mom and I as we wedged ourselves in her tiny room. Dad was able to sit, with minimal help getting up to a sitting position, for the procedure. Dad's body experienced nausea, dizziness and near blacking out along with weakness, but he was not complaining, just updating us as to what he was experiencing. He made sure to let Yolanda know that they did a relatively painless approach into his lung cavity, and thanked her for it. A total of 2 liters were drained off his right lung and sent to the lab for screening. The doctor was suspicious that the fluid buildup was the result of cancer cells attaching to the outer lung tissue and lining and he needed more information to know how to proceed...
Upon returning to his shared room on the third floor, Dad was ready for a nap. He reported slightly better breathing, but he didn't sound much better yet. He was looking forward to a long sip of water and lunch. We celebrated together over the new text from my sister. While Dad had been having nearly a half gallon of fluid drained off his lung, she and her husband were in court finalizing the adoption their new son! Dad had become a grandpa again and he couldn't be happier. We looked at pictures and discussed how proud of him he is. He's a good "kid" although he's rapidly approaching adulthood. Dad was so proud of my sister and her husband for their choices and sacrifices over these last two years...
Before he would sleep, Dad agreed to let Mom shave him. Dad has never, in the history of my life, skipped a single day of shaving. Every camp trip, backpack trip, road trip, and lazy weekend day at home included a full shave to get the day started. I can remember him shaving with a razor and a broken piece of mirror out of a stream in the Hellroaring Wilderness of Montana when I was in middle school. I asked him "why", when it was just us and the horses that would see us. His response was "that's how you get ready for the day". I love my mother for making him feel ready for the day on that day...
Following Dad's first pneumothorax, Mom got Dad "ready for the day" with a shave.
While Dad napped, Mom wrestled with her emotions and his edema. It's hard to watch them hurt.
The doctor had just been in a couple of hours before to let us know post-procedure x-rays showed the right lung was undamaged by the procedure and starting to refill with air. He ordered the procedure for the left lung for Wednesday. He was estimating another 2 or 3 liters would be removed off the left side. For now, we only had to wait. However, while he was in with us, he had lots of Advanced Directive questions for Dad. Mom had a hard time listening to his questions. She felt like they weren't giving her the full story of his potential side effects and prognosis and she let the doctor in on her frustrations with what his body had endured for the last several months. She had been deeply hurt watching Dad hurt and all of that was front and center for her emotionally in that moment.
Dr. Lambret was amazing with her. He validated every fear, every hurt, every concern. He was also blunt with us. He had let Dad know "you are at the end of your life, you need to let us know how you want to be handled if you become incapable of making decisions while you are here." He also let us know that while a person could be doing very well for an extended period of time, there is a chipping away at reserve energy and health; it can be almost imperceivable to the people living with it every day. It is like a slow moving load cresting a mountain; eventually the momentum shifts and there is an event that causes a rapid decent. He warned that this lung fluid and procedures could be the event that causes everything to shift and uses up the remaining reserves of Dad's health and energy...
He said it gently, but it slammed Mom like a ton of bricks.
It became clear that Mom and Dad needed to talk more about a Do Not Resuscitate order as well as his myriad of other options. Would he want life saving measures? The doctor was clear: "To preform chest compressions on your body in the condition that it is in with the full involvement of skeletal cancer, would border on malpractice and not many, if any, people in this hospital would be comfortable participating, including me. You would have to live with the consequences of us saving your life. You likely would have crushed ribs, possibly punctured lungs. I need you to tell me what Dayna is supposed to do if she comes in here in two hours and your heart has stopped."
I suggested Mom get some fresh air. It was nearing 4:00 p.m. and we had been watching Dad sleep while listening to his roommate talk on the phone for a mind-numbing amount of time. Now this information from the doctor seemed to burden her beyond hope. I also knew she had nothing to change into for herself since they had not planned on staying in Flagstaff the night before; we were approaching another night in a hotel. She also wanted to get Dad fresh underclothes so she could help bathe him later. I knew she needed time to think and pray. I told her not to hurry, but that I would call if anything changed.
Shortly after Mom left, I noticed he was getting sweaty. Dad asked for more blankets because he was cold. As a mom, I know that usually means fever. I called in Dayna, Dad's nurse. She checked his temp, 100-point-something... I said I was concerned and she admitted it wasn't great news, but that it could just be his body's response to inflammation. She'd talk to the doctor right away, she said. A few minutes later she returned. The doctor agreed that because it wasn't too high, they'd just keep an eye on it and give him some Tylenol for now. I called Mom to update her. I wasn't convinced it was anything major changing, but I knew she'd want to know. I encouraged her to stay where she was. She really needs her own sanity break...
Thirty minutes later it seemed like Dad was sounding worse. I decided to video his breathing so I had something to compare it to later. I didn't want to harass the medical staff and I was unsure. I had been watching each and every breath all day. They said coughing would be normal as his lungs started to re-inflate, so I tried not to worry at the drowning sound I heard between coughs...
A few minutes later, the doctor could be heard giving discharge instructions to the roommate on the other side of the curtain. Dad coughed. The doctor stopped mid-sentence and threw open the curtain. "Is he getting worse?!" he asked. "I've been thinking so," I told him. He left to get nurses. They immediately started him on two IV antibiotics and ordered another lung x-ray. Sure enough, Dad had developed pneumonia in his right lung. The doctor was sure that the bacteria was there all along, but that the re-inflating had really given it room to move in. This was a relief in one aspect- it was "community developed" pneumonia, not "hospital developed" pneumonia. He hadn't been there long enough to have picked up and incubated a superbug so the treatment would be much less demanding on his immune system.
They left Dad and I with his new IV pole laden with dripping liquids. Dad woke up and started trying to sit. "Help me up Little Girl," he said. I said "okay, where do you need to go?" "Just get me up!" Was all he responded with. I hit the nurse light. I knew I wasn't strong enough to help him anywhere. His nurse arrived and I told her the situation, the whole while Dad was trying to get himself up. We quickly decided to take him for a "walk" to the bathroom. He had not been in there all day and they needed to make sure he could still go. She called a second nurse to help. The bathroom door was about three steps from his bed. Dad shuffled with the help of the three of us and then went limp. He was fearful of falling and found my eyes; "Why would you make me get up?! I can't do this, please put me back in bed and don't make me get up again," he pleaded. I felt terrible. He was hurting and worried and had forgotten...
The three of us hurried to put him back in bed. He was dead weight, hot and confused. It wasn't an easy task, but Dayna and her assistant were so kind and efficient. As soon as he was situated and pain meds were administered, Dad looked at me and said "I need to get up, please help me get up." I was overwhelmed. I called Mom, but then hung up before the call could go through. No, she had been doing this for months. She said sometimes when he is in a lot of pain while he's sleeping he does this. It's like sleep walking and he never remembers it in the morning. I reminded myself of her words and decided that if she could do it, so could I. I would not bother her. I went back to Dad, who was still asking again to get up. I told him "no, we just tried that and you told me not to do it again. Go back to sleep." He nodded in agreement and obeyed.
The nurses returned a minute later. While they were working on getting Dad comfortable and his fever down, which had spiked, and adding medications to his IV lines along with checking vitals, Dr. Kennedy came in. She was a precious, soft and sweet woman. She introduced herself as our Palliative Care doctor. Her job would be primarily to manage Dad's symptoms and keep track of all of his treatments and drugs. She pulled up a chair and tried again to ask Dad a few questions about what his wishes are, what his treatment history includes... Dad was becoming delirious. Whether it was fever, medications, pain, inflammation, fluid retention or what, she wasn't sure, but he was no longer qualified to answer her questions. Dr Kennedy directed her questions to me while she watched Dad increasingly struggle to breathe. I called Mom, she didn't answer... His whole body was now working for every breath. Things had definitely changed and she'd want to know. I was given a wet washcloth to bathe his face to cool him down while Dana set up an oscillating fan pointing directly at his face- to help with breath intake as well as cooling down his body temp. Things were moving fast and started to feel a little desperate. I worried that this was "it" and I wasn't ready.
Then the question came from the doctor: "Would your father want us to intubate him if that becomes necessary? We don't have an Advanced Directive on file for him. Is that a life-saving measure he'd be okay with? I'm starting to think I might need to intubate and move him to ICU for a few days."
My mind raced and the familiar word screamed in the halls of my mind again. "NOOOOOOOOOOOOOOOOOOOO!" It was the one-word thought I could count on hearing anytime my dad crossed my mind. I hadn't let it exit my lips yet, or now...
How can I decided this for him? Of course he would want to live. Could she promise he wouldn't be on intubation forever?
"Yes", I told her, he would want to be intubated. I then that I was aware that my mom was standing next to me. She had walked in to that chaos; she had heard that question. I tried to briefly backtrack and catch her up on all that had happened in the last 15-20 minutes. She just looked at me with an impossible pain on her face. She surrendered herself to the chair in the corner and curled up without a word.
The doctor sat with us for a little over an hour. Almost as soon as she had asked the questions, the medications had taken over. Dad's fever started to come down and he started to regain consciousness. Dr Kennedy made sure he was comfortable and then left us to deal with the emotional chaos we felt.
As I sat there updating all of our family via text, my childhood friend texted an offer to find a hotel room for us. Neither Mom nor I had slept much the night before in the hellish hotel and today had been nearly impossible emotionally. She worked diligently, calling nearly a dozen hotels. All but one were booked and that one had bed bugs. It was already after 8:00 p.m. and I knew things would get harder. I joined her search.We were able to find one last room, a suite with a fancy price. Although it was probably a fancy suite in the 70's; it wasn't so much for 2016. It didn't matter, this one was clean and had hot water.
The suite, despite it's cold and damp interior, had a gas fireplace. Mom and I each had a shower and found our way to the living room area. We needed to talk and cry. We discussed the hard things of the day, like Advanced Directives... We also discussed prior conversations I had with Dad this fall when he was here. At that time he had reminded me that God wants us to live as Christians, but that he also wants us to die like Christians... Mom had been incapable of discussing any aspect with death with him and he with her. She needed to LIVE and stand for LIFE as long as he was living. She had thrown herself fully into nourishing him with living foods and supplements and discussions of anything contrary was more than derailing emotionally. I understood her point of view. She grieved the day, the month, the years... We discussed scriptures and hope through songs sung quietly, internally, over our spirits. I shared Though You Slay Me (feat. John Piper) by Shane and Shane with her. It was one that Dad and I had listened to and agreed with back in October...
Then we slept. Wednesday would be a new day...
Our cozy fireplace for night two in Flagstaff.
Dad's first full day at FMC. He's looking rougher than yesterday when he picked me up from the airport but he's still able to get out of bed for short periods of time.
I truly hope writing this down helps you, Collene. Lord only knows you deserve it!! God Bless you, my sweet child!!
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