Karen’s Health Journey, Friday, November 9

She died.

To be clear this was not the outcome I desired. This was not the outcome any of us desired. But it was the outcome it needed to be.

On Wednesday evening, I announced to the world visits for Karen would be appreciated. I knew she would be unable to communicate and may not even recognize those who came. But, not wanting to be selfish, I felt I needed these visits. The hospital is a lonely, lonely place.

I was amazed at the outpouring of love expressed by so many. Karen showed a change in demeanor when visitors came. She did her best to acknowledge people and tried to formulate words to convey her love. One of the more touching experiences happened when the Roberts family came. They lead the humanitarian effort to Mexico Karen and I have participated in for the past two years.

Ramon Roberts asked her if she wanted to go to Mexico one last time them. Karen gave two huge nods with her head signifying her excitement to be among her beloved Mexican friends one more time.

By 6:00 p.m. our daughter Emily, who drove down from Idaho, arrived and sat with me for a few hours. As I did each night before leaving the hospital, I asked the staff if there were any medical reasons I should stay. Typically, the nurses told me to go home and rest. This time, the nurse said Karen was fading faster than anticipated.

That is when I noticed over the course of the day the staff had removed all medicines from her IVs. Only the fluids and feeding tube remained. They were preparing for her to die just as we were.

The nurse assured that if Karen started to decline quicker, she would call me. So, my daughter and I left for home. All the way home I wrestled with the idea if Karen wanted to die alone or among those who loved her.

When Emily and I got home, Nancy, her mom, sister, and our granddaughter Miriam asked if they could go to the hospital to see Karen. Miriam is quite close to her grandma but because she was nine she is not allowed in the ICU. But the staff had made so many exceptions during the day when it came to visiting policy, I knew they would accommodate Miriam. Since they were going to the hospital, I asked them to alert me if they felt Karen’s decline warranted me to be at her side. After about an hour they returned and said she looked stable.

Soon after their return, Andrew got home and he decided to visit his mom one last time. He took Nancy and their older daughter, Rachel, with them. I again asked if they detected any reason for me to be at the hospital they were to alert me. Soon after they arrived, Andrew texted me that I should get there as soon as possible. She was fading fast.

Emily and I woke up the four grandchildren, packed them in the van, and drove to the hospital at midnight. When we arrived, Karen’s heartbeat was erratic and breathing was labored. She was so close to the relief of death.

All the grandchildren had a chance to say goodbye to grandma. Then Andrew and Nancy took them all home. That left me and Emily at Karen’s side. I called Jacob and Katharine, our other two children in Utah, to let them know that mom was fading fast and if they wanted to be at her bedside upon death they should get to the hospital as soon as possible.

At 1:00 a.m. I asked the nurse to terminate the oxygen.

By 2:00 a.m. we were all at her side.

By 2:03 a.m. her heartbeat went to zero.

At 2:04 she was pronounced dead.

She died very peacefully.

She was surrounded by her family.

She was ready, more than ready, to go.

If this is your first post, please click here to get the full story of Karen’s Health Journey.

Karen’s Health Journey – Thursday, November 8

So yesterday was yet another brutal day. I started dealing with the external necessities of death. I contacted our health and life insurance providers and arranged for Hospice care. Everyone has been so kind and I value their experiences because it made uncomfortable conversations much easier.

Andrew and Nancy talked with their five children who have been living with us for the past year and a half to let them know that grandma was coming home to die. I know that was a hard conversation but they seem ready. It will still be hard for them.

When I got home we removed all items from Karen’s office to prepare for the hospital bed Hospice will deliver later today. This was our first step in the process of dismantling various parts of Karen’s life. In the days and weeks ahead there will be more of this.

We also spent time going through the finances and I am so glad she is so organized. Her decades long attention to our financial health leaves us with a solid foundation so transitioning that responsibly from her to me should not be that disruptive. Of course, Andrew and Nancy have their doubts as the first financial transaction I attempted didn’t go as planned.

I sent out word today that visitors at the hospital are now welcomed. The staff here is decreasing the level of care and expressed a willingness to work around visitors. If you do come, please note that Karen will not be responsive. We are all convinced that she can hear and understand what is happening around her. So if you’re local, please come. She is in room 3318 of the ICU at the Payson hospital.

I am anticipating a visit from Hospice today to determine the time we will be taking Karen home. We invite all to come see her at our home starting Friday. I will post more information about times once I have them.

Yes, it is sad, very sad. But as I drove to the hospital today I was reminded that I don’t have a monopoly on sadness. To hear of so many who lost their lives in a mass shooting in California makes me appreciate that I had the time to ease Karen into her next phase of life. But it is still sad.

If this is your first post, please click here to get the full story of Karen’s Health Journey.

Karen’s Health Journey – Wednesday, November 7

“I want to go home.”

As I stated on the last post, Karen’s last audible sentence to me was just that. It broke my heart to tell her she had to stay in the hospital as I walked out the door. So, her words haunted me into Tuesday morning.

Just after I arrived, I got a text from a friend who happens to be a doctor here in Spanish Fork, and he asked the following:

Are the doctors giving any suggestions for a timeframe to monitor for recovery? I general I would not recommend longer than a week if nothing changes.

I know this was a difficult text for him to write, but it opened the door to a series of difficult but necessary actions on my part.

I honestly did not know how long to anticipate Karen having to endure this horrible process. But now, thanks to this text, I had the courage to ask.

When the kidney doctor came in, I asked him to give me an honest assessment of his path forward. What timeframe was he looking at? He told me that any further treatment beyond the end of this week, without demonstrable improvement, would yield little medical benefit.

I then asked two other doctors who have been caring for Karen the same question. They both said they would like a few more days to see if she responds to the treatment but after that they saw no real benefit to continue.

So, now I had to make a difficult decision. Should I continue treatment past the recommendation of the experts or should I take charge and make that decision on Karen’s behalf. But to go down that path, I had to let go of my cautious optimism and face a cruel reality – Karen is going to die.

Of course, I have no experience making a life and death decision for anyone, let alone my wife. So I felt that best thing to do was gather all the information I could to see what options were available. I had several lengthy discussions with the staff here who have the experience I lack. As a result, I developed the following plan.

We will continue the current treatment as prescribed by the doctors until Friday morning. If there is no major improvement, then we will disconnect her from all food, medicine, and dialysis and take her home on Friday. In short, I chose to honor her request and take her home.

This decision did not come without a powerful wave of emotion that was anticipated and necessary to express. At times, I have my emotions under control, but tears lay just below the surface. I hate to cry. Sometimes you have to do what you hate.

I called all my children to tell them of my plan to get their input. Then, to make sure I was lucid when crafting the plan, I had my friend, who sent the original text, come over and listen to the details of my decision to make sure I didn’t miss anything.

When I came into the hospital this morning, I asked for the doctors and social worker to assemble as soon as possible. While awaiting that meeting, I contacted my insurance company to find out if they covered home Hospice care. They do. For those unaware, Hospice care is reserved for those who are dying in a short amount of time. Hospice workers are authorized to administer pain medication to make sure the person dying is as comfortable as possible. I will have the Hospice vendor selected today.

To be clear to all this means I am anticipating Karen’s passing as early as Sunday or Monday. Once we have her home on Friday we will open our home to all visitors until she dies.

Of course, this is not the path any of us wanted. But I feel it is the best path available to her now. I don’t like it, but this process is not about me. It is about her.

I appreciate all the comments made by texts, e-mails, and Facebook. For those local, if you want to visit, her, I will post on this blog and on Facebook when visits can start.

While the emotions are raw and will be for some time, I was happy to tell her that I will take her home.

If this is your first post, please click here to get the full story of Karen’s Health Journey.

Karen’s Health Journey – Tuesday, November 6

As you can probably tell by now, I use this blog not only to provide you information of Karen’s status but also as a way for me to filter through the tsunami of emotions and deluge of information I experience through this process. So, forgive my indulgence.

Let me make Karen’s current situation more clear. Since Saturday night she has been mostly unconscious. Now that needs to be explained. It is as if she is in a deep sleep. She moves her head, arms, and legs but not in a coordinated fashion. She will open her eyes at times. At first, when she did this, I would rush to her side to try to talk to her, assuming she was waking up. More recently, I will only try to communicate with her if her eyes are open for an extended period of time.

As I have mentioned, she can respond to all basic commands communicated by the staff. If they ask her to open her mouth, she will. If they ask her to stick out her tongue, she can. But when anyone asks her questions that require more than a yes/no response, she attempts to respond only to fall back asleep.

Last night, my son Andrew and his daughter Rachel came to visit. I hoped, knowing how much she loves her grandchildren, she would be able to muster the strength to communicate more. I had the feeling she recognized we were all in the room and I felt she tried hard to talk to us but she was just too weak.

When I left last night, I took her hand and said I would be back in the morning. Her eyes were open and she was able to whisper: “I want to go home.” I explained she was too sick to go home but as soon as she was able I would honor her wishes and bring her home.

I will be honest, her request has been gnawing at me since. I know for a fact if she could see how she looks with six bags of IV fluids over her head, an IV line in both arms, and catheter in her neck, and a feeding tube down her nose she would be less than happy with me. She would ask why I let things get this far.

Yet I have had some brief conversations with her and she did agree, as best I can determine, to proceed down the medical path we are on. So I am still convinced we are doing what we should to this point.

I am trying to remain optimistic. I have had lengthy conversations the doctors caring for her to help ground me in reality. If she does respond to her treatment, she is looking at a lengthy rehabilitation process. She may be unable to come home for a month depending on her abilities.

I have been asked if she has brain damage. There has been no indication of this. She has never gone without oxygen and she can follow simple directions. So no one seems concerned about brain damage. But those of you who have Googled sepsis will know that a loss of mental abilities can result. So at this point, we have no idea what the long-term effects to her mind will be.

When I left the hospital last night, the nurse gave me great optimism. He said that looking at all her readings and the trend of her treatment resolving some of the chemical imbalances, she seems to be responding quite well. While that was great to hear, I realize their optimism is based on a very low bar. Patients in the ICU are all critically ill.

This is not the most optimistic of posts. To be clear, her status as not changed. She is critically ill but in stable condition.

If this is your first post, please click here to get the full story of Karen’s Health Journey.

Karen’s Health Journey – Monday, November 5

I arrived at the hospital before 8:00 a.m. Of course, I hoped Karen would be sitting up in bed and eating breakfast. But I knew that would be unlikely. Instead, she was still in her deep sleep. She had a peaceful night, well as peaceful as possible in the ICU.

The first dialysis was quite successful. Her ammonia levels fell slightly and her potassium count is back down to near normal. These are both indications that she is still responding well to all treatments. Because she has not eaten since Thursday, they discussed with me the need for a feeding tube. Now, in most cases such a measure is not even worth the discussion. You just do it. But I am walking a very fine line consenting to both dialysis and the feeding tube.

On Saturday evening, when Karen as last awake and able to have a discussion, she made her wishes known to the doctors, nurses, and me. She was quite adamant that she wanted no heroic measures to prolong her life. But those measures were restricted to breathing and heart functions. So she refused any CPR or breathing tube should it come to that.

Yesterday, when they raised the issue of dialysis, and today, when they discussed a feeding tube, I had to debate with the staff if we were violating the spirit of her wishes. In both cases I was convinced I was not.

Karen has suffered multiple organ failure as a result of the sepsis. Her kidneys stopped functioning on Saturday. The liver tried to compensate, but became overwhelmed so it started to shut down. On Saturday night, after I left, her lungs showed serous signs of stress and started to fail, but they came back on their own. Had the lungs not recovered we would be preparing for a funeral now. They did recover and there is no reason to assume they will be at risk.

So, I have to be careful to make sure I approve only those procedures treating her illness while not artificially prolong her life. I felt dialysis met that criteria because I am convinced if normal kidney function resumes her body chemistry will stabilize and she will see a full recovery. There is no timeline for the kidneys to restart. It can happen today. I can happen next month. But continued dialysis will relieve the pressure on her kidney and liver and extract the ammonia that is causing her to sleep 24 hours a day.

Similarly, I see the feeding tube as part of the healing process. I see no point in her starving to death when that can so easily be avoided. Another key to these two decisions is reversibility. In the event she stops responding to treatment, I have been assured by the staff that Karen, if she is lucid, or I can request the tube to be removed and the dialysis stopped. So I am confident these two invasive measures do not violate her request.

Now, the big question we all have is what happens next. As I have been told, the body can get sick quickly and heal slowly. So there is no timeline. My feeling is that after one or two more dialysis treatments she should wake up and that will be the best thing for her. Once she is awake, she can eat, walk, and exercise. These will be key to her recovery.

For those how have expressed their offer of prayers on Karen’s behalf, I suggest those prayers be targeted on her kidneys, that they may become fully functional.

If this is your first post, please click here to get the full story of Karen’s Health Journey.

Karen’s Health Journey – Sunday, November 4

Before I left the ICU, I made sure the staff was okay with me not being by Karen’s side 24/7. They assured me that while she was seriously ill, she was stable and what she really needed was rest. So I gave them my cell number and went home.

When I awoke Sunday morning, there were no calls or texts from the hospital, which was comforting. By 10:30 a.m. I was at the hospital and Karen was sound asleep. It is a deep sleep and no one has been able to awaken her to hold a conversation.

At this point, her kidneys have not yet started. So her blood his not being cleansed. As a result, they will put her on dialysis temporarily until the kidneys reboot. They are extremely hopeful that she will make a full recovery and she will not be a permanent dialysis patient.

Also, because her kidneys are not functioning her liver is reacting poorly. So the dialysis should allow her liver to settle down enough to do what it was supposed to do.

Click here for more information on Karen’s Health Journey.

Karen’s Health Journey – Saturday, November 3

I got up Saturday morning ready for my normal bike ride. I was considering my two hour ride, but felt I should not be away that long as Karen was sick. So I did my 45 minute ride instead. When I got back, I tried to awaken Karen, but she was quite unresponsive. She was breathing fine but I could not wake her up. I tried to get her out of bed. In fact, I had her standing up and walking towards the bathroom.

She complained that she was about to fall, so I got her back in bed. I was growing concerned that she would not wake up and was unable to walk on her own. She has a deep dislike of hospitals so I “threatened” her that if she did not get up I would call 911 and have her taken to the hospital. She shook her head no and feel back to sleep.

I promised to give her a few hours to wake up on her own, so I went on with my Saturday chores. Three of the five grandchildren wanted breakfast and were being less than patient with poor Miriam who was trying to get them fed without bothering their mom. So I helped Miriam get her and her siblings breakfast.

The fall leaves from our trees had littered our front and back lawns. We don’t own a rake, but our lawnmower acts and an effective leaf vacuum. So I cleared both lawns of leaves.

When I was done, I checked on Karen and she was still in a deep sleep. This time when I tried to awaken her, she seemed confused and couldn’t make a simple sentence. I was now more than concerned. So I went downstairs to my computer to get the number of the hospital to seek their advice on what I should do.

After describing her symptoms, they said we should get her to the hospital as soon as possible. By this time, Nancy had called Karen’s friend who had come on Friday and she came over with a blood pressure kit to measure Karen’s blood pressure. Andrew was out shopping with Zoë so Nancy contacted him to get him back as soon as possible.

We could not get the blood pressure device to work but it really didn’t matter. I was going to get her to the hospital regardless of the results. When Andrew got home, Karen’s friend left the bedroom and stated she could not get a reading on Karen’s blood pressure. Andrew was unaware that the machine had failed and was convinced his mom had just died. I quickly explained the problem was with the machine and not Mom.

The hospital asked if we needed ambulance and I declined. I was sure she was not that sick and I was concerned about the cost of the ambulance. We called Linda, Karen’s sister, who lives nearby. Her husband, Trevor, is disabled and they have extra wheelchairs and a van equipped to transport someone in a wheelchair

I had Karen dressed and had her sitting up on the edge of the bed as we waited Linda and the wheelchair. Karen was awake but she was not lucid. She struggled remembering her name and how many children she had. When she tried to speak, words like Payson Hospital came out “Monson Popsicle”. She was obviously not in her usual frame of mind.

When Linda arrived we got Karen into the wheelchair and I asked Andrew and Linda to get her into the van while I changed my clothes. I was still wearing my ridiculous biking clothes and I didn’t want to be wandering the halls of the hospital looking like that.

When I was done, we decided I would drive the van with Karen and Andrew would take Linda home and then meet me at the hospital in my car. This way Andrew would take the van home once we were done at the ER and I would have a car at the hospital.

By the time I got to the hospital, successfully disconnected the wheelchair from the van, opened the van door, and lowered the ramp (sounds like it should all take be a few minutes, but it was a bit more complicated than I thought) Andrew was at the hospital. So we entered the ER together.

When we got back to the ER exam room, there seemed to be a number of people ready and anxious for Karen’s arrival. They were anxious because late Friday night they got back the lab results on Karen’s blood. She had sepsis!

This word, sepsis, alerted both me and Andrew. Five years ago, my step-mother died very quickly from sepsis. Once this massive blood infection permeated my step-mother’s body, her organs shut down and she died. So I had a conversation with the ER doctor explaining our concern with the diagnosis of sepsis.

They explained that Karen’s sepsis was the result for her pneumonia.  (At this point, I apologize in advance to any reader who has more medical knowledge than I do, which would represent 99% of the world’s population, for the misstatements I will make throughout this narrative of all things medical.) Typically the kidneys filter the blood of such infections. But because Karen was so dehydrated from sleeping so long, her kidneys were failing and the poison in her blood was killing off the cells.

One of the more dangerous chemicals is potassium. We were told that a high potassium count can lead to heart failure. Her count was high, not out-of-this-world high, but high enough to keep the ER team concerned.

After about an hour of inserting IVs and pumping her body full of numerous clear fluids, Karen respond positively. She awoke from her deep sleep and was entirely coherent. We explained to her what had happened and she could only remember bits of pieces of what took place over the past few days.

Because of the shock to her system, the doctors decided to admit her to the hospital and send her to the Intensive Care Unit (ICU) where she could get all the attention necessary. She was awake and aware for the rest of Saturday evening and the doctors were very pleased she reacted so well to the treatment. She was weak, very weak, but she was progressing.

Click here to continue to follow Karen’s Health Journey.