The Day You Died – Part 1

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*Disclaimer….. this post contains vivid descriptions of hospital life both before and after someone has died. From my perspective. I hold nothing back.

I slowly became aware of my body, my hip poking into the metal frame of the cot. I opened my eyes, foggy from the short, heavy sleep I was able to have for a few hours. I rubbed my eyes and glanced at the clock. It was only six o’clock in the morning. I still had an hour until I would need to be dressed, and let’s face it, by now the teams of people who had entered the room so early in the morning were used to my bed-head and they had all seen my sheep pajamas. I checked on John. The monitor looked good. Temperature – normal, blood pressure – normal, heart rate – normal, oxygen – normal. His eyes were closed and he seemed to be resting comfortably. I look over to the other side of the bed, my second oldest daughter, Anna, was clearly still asleep on her own cot.  I decided that I now had permission to go back to sleep and let the medical staff see me in my pajamas once more.

About five minutes later, as I was close to drifting off once again, a nurse came into the room. I knew without looking; it was time for morning meds. She stood between John and my cot and put each pill into the little container. Meds took so much longer now that John had a nose tube and wasn’t able to swallow anything on his own yet. She put each of them into the container, one or two at a time,  and turned the lid to crush the pills into a fine powder. She worked for several minutes, there were a lot of pills. Each one was checked against her computer, scanned, opened, and crushed.  I had a spreadsheet on my computer filled with the lists of meds that I was responsible for giving on the few days that we were actually at home, and I had my phone’s alarm set for 13 different times each day in order to make sure that I didn’t forget any medical need throughout the day. The nurse, now finished with the crushing, transferred the powder into a little cup, added some water and stirred it up into an orangish medicine cocktail. Then she used a syringe to transfer the liquid medication to his nose tube and the orangish fluid slowly moved up the tube, into his nose, and down his throat. He didn’t move.

Deciding that there was no way that I would be able to get back to sleep again, I sat up, grabbed my clean clothes and bag of toiletries from my suitcase, and walked down the hall to the guest restroom. Once there, I performed my daily grooming tasks as I had done for 82 days before. I washed up, brushed my teeth and brushed my hair, putting it back up into the pony-tail that I had been wearing it in each day. I wiggled to get dressed in the small confines of the restroom. Once finished, I grabbed my supplies, carefully tucked my sheep pajamas over my arm, and went back to the room on the 8th floor. One wall of the hospital room was almost entirely windows, and while this side of the hospital menacingly faced a cemetery, if you didn’t go up to the window and look down, but rather sat in a chair and looked across, it provided a beautiful view of the tops of the trees. They were just beginning to change, bright yellows, oranges and reds were starting to punch the ends of many branches. Just yesterday, when John’s physical therapy consisted of sitting up without support on the edge of his bed for five minutes, he asked to face the window. I watched him as he could finally see out the window and get a glimpse of nature, something he complained about missing so often. I saw as his eyes lit up once he caught sight of nature’s performance. The smile crept from his lips to his eyes as he said, “It sure is pretty!.”

Talking was hard for him now. Not only was the nose tube proving to be irritating the back of his throat, he was also very dry because he was not allowed any liquids until he passed the swallow test. Each morning, the speech therapist came in and assessed his swallowing. Each day, he slightly improved from the brain toxicity that landed him back in the hospital and made him unresponsive for several days. We hoped that this morning, when the speech therapist came in, he would pass the test and could have some ice chips. It had been 10 days since he had been able to wet his whistle. On top of that, he has mucositis, a painful inflammation of the entire digestive tract, from his mouth, down his throat, and through his stomach and intestines. This was thanks to the chemotherapy. He had terrible sores on the inside of his mouth that were now scabbed over and dried. Just yesterday, the nurse spent over an hour moistening a washcloth and working to free his mouth of the worst scabs that were causing him pain. He moaned and turned away from her when she tried to clean his mouth. We all giggled, happy to see him alert enough to voice his displeasure. It had been several days where he was almost stroke-like, arms held up in the air, eyes open, yet unresponsive. The doctors had never seen a case of brain toxicity so severe. Brain toxicity, with this particular chemotherapy, occurred less than one percent of the time, and usually wasn’t severe. On top of the sore throat and mucositis, he had also contracted c-diff. C-Diff is a highly contagious infection in the stool, typically contracted by patients who have had extended stays in the hospital. It meant that extra precautions had to be taken, gloves and gowns were worn by all staff entering the room, which took extra time, but afforded us a buffer, seeing that they were planning to come into the room before they actually got there.

Once my things were put away, I noticed that John was awake. I said good morning, and he said good morning back. I asked him how he was feeling, and he raised his hand to make the so-so gesture. I made up the blankets on the cot and gathered my devices to check in on social media and return the texts of my friends. I asked Alexa to play a song that had recently become one of John’s favorites, “Home,” by Phillip Phillips. I settled into my chair and waited.

The first doctor, the cardiologist, came in a few minutes later. He repeated the same message that he had given to us every day, “Things look the same,” he told us. “If there wouldn’t be a history of heart events over the past few months, I would sign off on your case because there has been no unusual heart activity since you were admitted ten days ago. But, I will keep checking in here until you are discharged to the rehab facility.” Good news, indeed! We smiled at him and said our thanks as he walked out of the room. One down, two doctors, speech therapy, physical therapy, chaplain services and a never ended barrage of nurse visits to look forward to in the next twelve hours.

Anna woke up and got herself ready just as the speech therapist came into the room. A sweet, quiet soul, she helped John to sit up a bit more in his bed and tested him with a variety of liquid consistencies. He passed on all of the thicker consistencies, like pudding and an ice chip. He closed his eyes and slowly nodded his head to tell her that yes, the ice chip felt refreshing. But, when she got to the teaspoon of water, he held it in his mouth for a long time, concentrating hard to swallow. Finally, he did swallow, but she felt that he needed just one more day before it would be safe to remove the nose tube and let him have food and liquids.

The nose tube had been in for about nine days, and more and more phleghm was accumulating around it, especially without being allowed to have liquids to help wash it down. John started having a hard time breathing because of this, and the speech therapist spent several minutes getting his airway more open so that he was comfortable again. This had become our new routine, and each day it seemed that there was more and more phlegm and that it was causing him more breathing problems. After he was repositioned, he was settled, and more at ease, the speech therapist left, promising to return the next morning.

After a little bit, it was time for the daily “wash up.” A male CNA, who we had worked with previously, came into the room and got John ready. John really liked him. He always seemed to be pleased to have a guy around. Ryan collected all of the necessary materials, and this was always my cue to go for a little walk down the hallway to the family lounge to get a cup of coffee.

By the time I returned, they were just getting John into a new position and propping pillows behind his back for him to lean into and keep the pressure off of his lower spine. Yesterday they had noticed a small bedsore, again. This was probably the fourth or fifth time that he had developed one. They were always small, like this one, and in a few days they often healed up without problems. But as they adjusted his gown, I could see his lower back and I felt my heart skip a beat. In the past twenty-four hours, something had happened. Now there was not just one bedsore, there were two, and each one was as large as a half dollar, much larger than the pencil eraser size they had been the day before. “Did you notice the bedsore?” I asked Ryan.

“Yes, I did. I”ll be charting about it. I think someone must have been a little too aggressive with the bathing recently. It wasn’t that large the last time I cleaned you up, John.” John said nothing.

Next, the palliative care doctor came in, and we talked for a bit, with John joining in once in awhile. The doctor commented on how John seemed more alert than he had the day before. A few days ago, John was completely unresponsive, but I was assured that he would be fine, so when the palliative doctor came in that day, I started talking with him about baking bread and we swapped different recipes. He even wrote down a basic artisan bread recipe for me on the white board in the hospital room. “I bet that you’ve never written notes like that on the whiteboard before,” I teased him. He told me, with a giggle, that he hadn’t.

Everything looked good. The hospital oncologist came in and gave us more good news. John’s blood work was improving and the reports from nursing and the therapies said that he was getting stronger. Once the nose tube could be removed, we would be looking for a place to go for rehab in order for John to get stronger. There was just one small concern, some odd test results with John’s liver, probably from the medication, he told us. He ordered a liver ultrasound to rule out other concerns, and based upon the results, he told us, the team would probably be making some medication adjustments. And then he also left.

With no unwanted surprises, and having been reassured that things were on the right track, John and Anna both took a nap. I decided to use the quiet time to get caught up with some paperwork. I had a pile of paperwork from school that hadn’t moved out of my bag in over a week and there were people waiting for it. Ryan got me a computer table and I got set up with another cup of coffee, my papers, my computer, and  I quickly got busy. It felt good to be calm and doing something normal again. All was quiet, calm and peaceful for the next couple of hours. John woke before Anna did, and he quietly asked me to come closer to him. “Hold my hand,” he said, and I moved my chair to be sitting next to his side as I took his hand and held it in my own. We just sat there quietly, holding hands and looking at one another.

Our regular oncologist soon came in to visit. Normally you don’t see your oncologist while you are in the hospital unless it is their week to have hospital duty. It wasn’t her week, but she wanted to come in and chat with us about some new information that she had received. I think that we were both nervous at first. There had been more bad news than good over the past few months, so we braced ourselves and waited. “The chemo has done it’s job,” she told us. “The lung met that you had doesn’t appear on the last scan, so we can assume it is gone. Also, because of the difficulties you have had from the chemotherapy, I think you can take a chemo holiday. Go to rehab, get stronger and take a few months off! Then we will meet and start again with a new set of scans to see where we are.” We stared at her with our mouths open. And then I saw John smile. Really smile. His eyes lit up and his face was beaming. I hadn’t seen that for a long time!

After she left, we sat for awhile. We sat in calm quietness just repeating the words, “The chemo worked! The chemo worked!”  And we thought about all the things we would be able to do without chemo causing the problems like it had been all summer.

And then John started having problems with his breathing again. I called for the nurse and she repositioned him once again, but it wasn’t working. John looked at me with panic in his eyes, unable to talk, not really breathing as he gestured to me to tell her, which I did. Louder this time, “He CAN’T breathe!” She very calmly replied, “We are working to help him with that.” And soon Ryan was in the room. The two of them used the suction machine, repositioned John again, and gave him some oxygen. Just then the transport girls arrived in the hallway to take John for his ultrasound. “Can’t the ultrasound machine be brought to him, like the other times? He’s not breathing very well,” I asked.

“No. It wasn’t ordered as a portable,” one of the girls told me. He’ll be fine,” she said. “We’ll take good care of him,” the other, very young girl told me. I stood in the hallway, leaning against the wall, too afraid to go back into the room for fear that things had gotten worse. Anna remained in the room and gave me a thumbs up sign every few minutes, but I kept pacing the 10 feet back and forth outside his room. Then the nurse came out, with Ryan and I asked them, “Couldn’t this test be postponed for awhile, he really needs to have his airway cleaned out again. It’s gotten a lot worse today.” Ryan assured me, “He’ll be just fine. He’ll be back in a little bit and we can do more for him then.”

I went in and sat down on my cot as the girls prepped him for the test. They unhooked the IV machine from the wall, connected the recently added oxygen to to the tank on the bed, adjusted the pillows and blankets, and then they were off. “I love you,” I said, just as I had every single time before he left the room. “I love you, too.” He replied as usual. Those were our last words to one another.

I had originally planned to leave the hospital for lunch while he had the test, because it was such a routine test, but I was exhausted from the stress of him having a hard time breathing. I told Anna that we were going to stay put, and I laid down for a quick nap. I slept hard. An hour passed and I was out like a light. I was jolted from my bed by an all-call in the hallway of our hospital ward. In the 83 days I had lived in a hospital, I had NEVER heard an all-call before. Never.  “Nurse Felicia, you have a phone call at the nurse’s station.” Felicia was our nurse. Anna immediately looked at me and said, “He’s been gone for an hour, that’s a little long for an ultrasound, isn’t it?”

“Yes,” I replied, “but there have been plenty of times that tests took a lot longer than they needed to.” And just as I finished saying this, Felicia was standing in front of me, looking at her shoes.

“They’ve called a code blue on John,” she said.

Wait. Code BLUE? I panicked, but quickly remembered the other time in this hospital that they had called a code blue on John. I remembered asking the nurse why they didn’t do CPR that time an she told me that in this hospital, a code blue could be called either because someone’s heart had stopped, or they feared that it might stop. On that occasion, they feared that his heart might stop, but it never did. So I hoped. I hoped and pretended that the look on her face didn’t mean what I knew that it meant deep down inside my soul. And then I asked her, “Is it a code blue because they think his heart might stop, or has his heart stopped?”

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“His heart stopped and they are doing CPR. You need to come with me, please,” and she led Anna and I out of the room and down the hall. Now it was me who was looking at my shoes. Once at the nurse’s station, Felicia was called to another patient and we stood waiting while they figured out who was free to leave the ward to take us to ICU. Apparently, Felicia could not leave. Finally, another woman who I had never met before offered to take us and we walked quietly with her, the sound of my own heart pounding so loudly that it seemed to rattle my entire body and echo down the hallways of the hospital. The nurse took us to a large waiting room where I could feel the eyes of dozens of people on me. I had seen people taken into this room before. They always came out crying and hugging. This was not good. The door was opened, and inside was the medical assistant who we had worked with many times over the past few months. Seated next to her was a doctor I didn’t recognize. They gestured for us to sit down. I sat down and immediately leaned forward, putting my head in my hands and staring at the doctor’s brown shoes.

“I’m the Code Blue doctor. Your husband arrived at the ultrasound and was unresponsive. They began CPR and he was moved to the ICU. They’ve been working on him for an hour. His heart stopped, but we were able to start it again with some medication. But I have to warn you, I don’t think it will last. It was a miracle that we got his heart started again at all, and I think that the only reason it did start is because of the medication. Once the medication wears off, which isn’t long, I believe that his heart will stop.”

I stared at his shoes, rocking back and forth.

“It’s not good, Kristy,” I heard the medical assistant say. “I was in there. They were really working hard, it seems brutal to John’s body, Kristy.” I heard her voice, but could only focus on the fact that she suddenly was calling me by the wrong name. After months of correctly calling me Kristyn, why NOW was she calling me Kristy?

The code blue doctor continued, “I’m asking for you permission to stop resucitation efforts should, no when, his heart stops again.”

This isn’t happening. This can’t be happening. This is a TV show… it’s just like a fricking TV show where someone is dying and the wife is told and she rocks back and forth looking at the doctor’s shoes. I’m on a fricking TV show. This CAN NOT be happening.

“No.” I told the code blue doctor, immediately proud of myself. “No. I can’t give you that permission. John completed the living will paperwork saying that he wanted every effort taken to save his life. I cannot, I WILL NOT go against his wishes.”

“But Kristy,” the medical assistant chimed, “you don’t understand. I’ve seen him. It’s really bad,” she then went into some descriptions of how they were banging on John’s chest to try to keep his heart going and that it had been going on for a long time, over and over, and that John wouldn’t want that.

I very calmly clenched my teeth and spat at her without lifting my eyes from the doctor’s brown shoes, “MY. NAME. IS. KRISTYN.” She didn’t say another word and a few seconds later, she left the room. Soon afterwards, the palliative care doctor came in and told Anna and I how saddened he was to have gotten the news that John was not doing well.

The code blue doctor kept asking me to reconsider, kept pushing me and explaining the severity of the situation. I equally pushed back and calmly told him, “You don’t understand. I was there when he signed the papers. I know what his last wishes were. I cannot go against that and live with myself by telling you it’s ok to stop. I understand what you are saying and I understand what you want me to do. I am NOT going to do it. “

It was quiet for awhile and then he spoke again. “Well, if you are not going to give me permission to stop efforts, then I will have to call it as the doctor in charge. I cannot let my staff or your husband go through any more when it is futile. When he codes again, I will have to direct them to let him go.”

“I respect that,” I told him. “You are doing your job, and I understand. I hope that you understand that my job, as his wife, as the person who was there when he said he wanted every effort to be taken, I hope that YOU understand that I cannot go against the last wishes he had, no matter what you say is happening. I would have to live with that for the rest of my life. I respect that you have to call it, that is your professional responsibility,” and then the pager beeped.

“CODE BLUE TO ICU!” “CODE BLUE TO ICU!”

“That’s your husband,” brown shoes said, “I”m going in there and calling it.” He left and the room was silent as I continued to sit with my head in my hands, rocking back and forth and staring at the spot where the brown shoes had been. A few minutes later the door opened a pinch and he announced, “He’s gone.”

I immediately leaned so far forward that I would have fallen onto the floor if Anna and the palliative care doctor had not caught me. I screamed… the quiet internal kind of scream that linger on and on forever. I was aware of all of those eyes just a few feet away in the waiting room. I didn’t want to be the person they heard wailing while they looked at one another and said, “Something bad just happened in there.” So I screamed this quiet high pitched wail of a scream until I found some strength from somewhere deep inside…. and stuffed the pain deep down, stuffed it in the place where I had stuffed the pain of all of the other losses I had experienced over the years. And I shut the lid on it… for the time being.

Part 2 –  Click HERE to find out what happened after he died, where we were taken, now we had no support, and finally Anna drove us home alone. Then I had to tell my youngest children.

But – during the days after he died, I would suddenly hear this song, and something forced me to stop whatever I was doing to listen to it. I honestly don’t know why. After several times, I REALLY listened to it. I had never remembered hearing the song before and it often became a sign to me, that John was around…. just not in the way any of us wanted. Take a listen and read the lyrics.

If you, or someone you care about is dealing with grief, here are some tips for coping with grief from people who are dealing with it themselves!