Compilation of letters sent out by Lee

Monday
December 22, 2008
Dad’s Hanging In There
Second Night of Chanukah

Dear Family,

For those of you with whom I have not yet had a chance to speak, Dad is the hospital ICU on life support. Yesterday he went in for a routine and usually out-patient procedure of having a hard catheter inserted in his artery as prep for further work. In recovery, he developed complications and was returned to the OR where a balloon stint was placed in his heart valve. He has severe heart disease, including at the time of the procedure, a 90% blockage in his main artery. This was addressed in the surgeries yesterday. We are waiting to see how he does.

I have been designated as the family spokesperson. Further, Dad designated me as his agent regarding medical decisions in the event that he is unable to communicate. About two weeks ago, I sat with him in the comfort of his dining room and we discussed his ideas, beliefs and desires concerning end of life issues. I am now acting in the capacity of his agent as he is heavily sedated and unable to respond. The ICU has asked that only one person be the vehicle for communicating with them and that other family members give their questions to me to ask.

At about 4:30 this morning I spoke with Lorraine. She explained that his cardiac enzyme makers had been elevated as a result of the first procedures. These markers indicate heart attack or heart damage.

BLOOD PRESSURE: The ICU is monitoring his blood pressure. The pressure numbers that they use are not those that we generally receive during routine pressure readings. I asked his numbers anyway, just to establish a baseline against which we could compare throughout the day. At the moment his readings are 126 / 48. He is being administered 60 mics per minute of neo-sinephrene. This is down from 100 mics last night. The staff is watching for his mean arterial pressure to be maintained in the 70-80's. He is close to that number at the moment. He has improved enough so as to warrant a decision to slowly reduce this medication, watching to see if he can maintain pressure on his own. The reading of 126 over 48 reflects improvement from last night. He is in critical condition, yet now stable.

BLOOD LOSS: Dad's heart is being rested via machines that pump for him. They require a certain blood volume to properly function. He lost blood during yesterday’s cath procedure and is at present receiving his 3rd unit of blood. His hemoglobin is being monitored to determine ongoing blood needs.

FLUIDS: He is receiving fluids via IV. He might need a feeding tube in a few days. I will need some help understanding at what point his potential for recovery will be sufficiently small such that I refuse additional help on his behalf. We are NOT at that point as of now. He is continuing to make urine, which is a good sign.

BREATHING: Dad is on a ventilator. This is helpful due to the high level of sedation.

KIDNEYS: The staff is cognizant of the effect of low blood pressure on kidney function and continues to monitor his kidney functioning.

DIABETES: His blood sugar is being monitored. He is receiving insulin. X-

RAYS: After moving Dad from the OR to the ICU, he was x-rayed to confirm that the balloon stint is still properly positioned and to check his lines. His lungs are also being monitored via x-ray. He will receive a daily x-ray in the mornings.

ANESTHESIA: Dad is not conscious. He is being heavily sedated to control pain from the surgical procedures. The sedation also keeps him still, which is a necessary component of his healing process at the moment. Although the staff did not mention this, I know Dad also has a very tough time in the hospital beds and with lying in one position as he has been suffering with arthritis in his spine. Hence, I believe that this is a good decision.

CANCER: If Dad recovers from this hospital stay, he will probably return to the hospital some time in the next few weeks for major surgery to remove a cancerous tumor in his colon. There is no way other than surgery to treat this form of cancer. Our understanding is that at this point, the tumor has not metastasized. With this surgery on the horizon, we could say that even once he is out of the woods, there is another whole forest just around the corner.

VISITING: The ICU is open to visitors 24 hours a day, with the exception of between 7 and 8 (both am and pm). That is when there is shift change. There are occasionally other times when it closes. Sometimes between 3 and 4 if the shift is an 8 hour instead. To visit, we go to the 5th floor at Sharp Memorial and use the phone outside of the ICU to announce ourselves to the staff prior to entering.

DAD'S WISHES: I believe I have a clear understanding of Dad's desires. I am mentally and emotionally prepared to carry out his wishes, should the need arise to discontinue medical treatment. That being said, I want each of you to have the opportunity to ask questions of the staff via my interactions with them. Let me know what you wish to know and what clarifications you need, if any. I will do my best to get you what you need. If you believe I am misunderstanding anything, feel free to let me know. We are all a team here. I want each of you to know your ideas and suggestions are welcome. I want each of us to know that our input is valuable. I see my role as one that requires leaving each of us with the feeling that we have been heard and that our wishes and desires have been considered prior to any difficult decision. That being said, it is Dad's wishes and not ours that ultimately will prevail.

COMMUNICATION: Please let me know the best way to reach you. If there is someone you wish to add to the e-mail list, let me know.

PRAYER: If you have a prayer practice, please feel free to pray for Dad. As you know, he was not of that mind. But nonetheless, I want to hold open that space for your heart to love freely as you best know how.

With blessings of love and light, Lee


Tuesday
December 23, 2008Today’s Charmin Charlie Report
Third Night of Chanukah

Dear Family,
I visited with Dad twice today. I was exhausted and needed a nap in between.

Here is an update:
BLOOD PRESSURE: The amount of blood pressure medication has been substantially reduced from 60 mics to 2 mics per minute. This is good. His mean pressure today during the times when I was there hovered around 60, but reached a brief high of 80 with medication.

BLOOD LOSS: He has received approximately 6 units of blood.

FLUIDS: Staff reports that his kidneys seem to be improving in their function as Dad is producing substantially more urine today.

BREATHING: Dad remains on the ventilator. There is a small amount of bleeding coming from the tube that removes fluids from his stomach. The blood could be a result of the intubation. He is on anti-coagulant medications so that may contribute to this continued condition. It is insubstantial in amount and continues to be monitored.

KIDNEYS: Improving.

DIABETES: His blood sugar continues to be monitored. He is receiving insulin and this is well controlled.

X-RAYS: Dad had an echo-cardiogram and the cardiologist reports that the ejection fraction had been markedly reduced, but as of today the fraction is moderately reduced. This is a small improvement.

ANESTHESIA: Dad continues to be heavily sedated. He is also receiving some pain medication to prevent issues of discomfort which might result from his back condition. The staff states that as long as he is hooked up to the heart machine, the safest condition is to keep him calm and sedated

OVERALL: Dad shows some small signs of improvement. We are anxious to hang our hats on these small steps and relax into a feeling of optimism. However, the medical staff remains very guarded in any signs of optimism, reminding us that he is still very, very ill. One of the nurses expects that if he continues to improve and if his heart grows strong enough to remove him from the machines, he will still likely remain in the hospital ICU beyond New Year’s Day.

We who have looked in on Dad agree that his color looks good and he looks restful. Occasionally his feet move and the nurses explain that they are keeping him as minimally sedated as is possible under the circumstances. He is wearing inflatable boots to avoid bed sores. The staff moves his position every two hours. As his representative, I did inform the nurses that, were he conscious, certainly he would be quite pleased that there are two young, beautiful women tending to his every need and he would be rather emphatic in expressing this position.

The staff encourages us to visit, but I don’t believe that he is aware of our presence. Thinking his soul is receiving our love and having the opportunity to relay messages of healing from the family is comforting to me, so I will continue to visit him. I spend my time holding his hand, which is cold from the low pressure in his heart. I imagine that holding his hand warms it up and makes him more comfy. I sing to him and hum thinking that the quality of my singing and a strong desire to escape me might inspire him to heal quickly.

Although there is a machine pumping blood through his body, the real heart, the place where he holds each of you with love and fondness I am sure pulses with the generosity of spirit that has sustained him for nearly 80 years. As you love and support Dad from afar, know that you too are being held close and cherished.

Blessings of love and light, Lee


Wednesday
December 24, 2008
Charlie’s Christmas Story
Christmas Eve / Fourth Night of Chanukah

Dear Family,

I called one of Dad’s nurses early yesterday (Dec 24th) morning and felt very encouraged that Dad had been weaned off of one of the blood pressure medications. A care plan was emerging. They would take an echocardiogram to assess the movement of the heart walls and chambers later in the morning. The staff explained that Dad has an intra-aortic balloon pump helping support the heart’s function. The pump was set at a 1:1 ratio meaning it pumps for Dad, giving his heart a rest. Since he had signs of improving the plan was to begin to wean him off the machine by setting the pump to 1:2, meaning his heart was responsible for every other pump.

Around 10 am I got a call from one of the docs who, upon evaluation of Dad’s vitals, concluded that Dad was losing blood somewhere. This was reflected in a hematocrit (oy, with the fancy words that even spell check can’t understand – could I get a little help here, Bill Gates??!!) whose optimal level of ‘in the 40s,’ had been tolerable with Dad’s ‘in the 30s’, but had dropped to 19. The doc explained that this was a dangerous sign. It meant Dad was bleeding internally somewhere. The complication was that he was receiving an anti-coagulant to facilitate the heart machine’s process and hence the situation was a Catch-22.

The decision was made to take Dad into surgery and remove him from one of the heart pumps. This meant sudden removal, rather than weaning. This meant removing the big tubes that had been inserted in his groins, traveled through his blood vessels into his heart and hoping he would not bleed out, have another drop in blood pressure or a heart attack. This meant gathering the family and the doctor around and explaining that Dad had requested a DNR (do not resuscitate) order be in place some while ago. Hence, if he went into cardiac arrest, I requested that the doctor refrain from chest compressions and permit Dad to die. Although it sounds like a very difficult thing to verbalize, I was calm and centered knowing that I was articulating Dad’s wishes, and those wishes had been very, very clearly explained to me.

As the family lined the hallway that lead away from the Intensive Care Unit, as we watched Dad resting so peacefully while they guided him into the elevator and toward the operating room, it was tough and teary. The risks were so grave we all felt that we would not see him again.

The waiting area was cold and forever. It was as cold as Dad’s hands have been. Mom called maintenance who agreed to send someone to adjust the temperature. Dane had brought sandwiches for us all. Most families would have been too upset to eat. Not ours, naturally. We’ll eat no matter what. I slept on the floor and awoke covered with a blanket loaned by another waiting family. These sterile hospital waiting areas amazingly nurture such caring and kindness – a camaraderie of strangers among the souls in waiting. Burdened with their own problems, they nonetheless ask about us and our loved ones, offering up prayers for those they do not even know. In the darkness we always seem to find sparks of light. I thought of the Chanukah menorah at home waiting for us to kindle its flame. What beautiful symbolic parallels I saw.

After several [thousand] hours, and in this season of miracles, the doctor arrived with good news. Dad survived and was on his way back to the ICU. A wave of relief swept over the family. What a day of ups and downs. Some of us relaxed into exhaustion, allowing the reality of the rest of our daily lives to give rise to a wave of good-byes. Some of us stayed a few moments longer, just long enough to lay eyes on our sleeping giant and to see the maintenance man finally arrive to adjust the temp of the room as we were leaving.

As Dad was wheeled off the elevator his gurney passed over a bump where the carriage meets the floor. Underneath the sheets, I saw our big elf sleeping soundly, still a bit chubby and plump, the bump made his belly shake like a bowlful of jelly. He was guided by ‘reindeer’ dressed in green scrubs. He spoke not a word, but went straight to his work of healing and rest. And I had to laugh in spite of myself, because in my heart, I heard him exclaim as he drove out of sight:

Happy Christmas to all and to all a good night!
***

Thank you all for the support each of you provide in being yourself and doing whatever you uniquely do – the thoughts, the prayers, the quiet spaces.

In your light, I see light.

Love, Lee

Thursday
December 25, 2008
Charlie Kickin’ Ass
Christmas Day / Fifth Night of Chanukah

Dad is behaving just like a bullheaded Norwegian. He’s stubbornly defying the odds. When the doctors speak with us, their facial expressions give new meaning to the term: shock and awe.

The echocardiogram looked ‘surprisingly’ good yesterday morning according to the heart doc. As a result, the staff pulled out the balloon stint. Dad held well. Yesterday was mostly a day of rest for Dad. At one point, the nurse elevated the upper half of the bed and it looked almost as though he was sitting up and smoking a peace pipe (the respirator).

He received more blood yesterday. I think he has qualified for membership in the International Order of Vampires and as such will receive their members’ only Costco quantity discount. Actually, the number of units needed has diminished, but since he needs any at all, that means there is cause for concern regarding his continued bleeding from an unknown site in his body.

It is my understanding that, as part of today’s plan, the staff will lighten up the level of sedation and endeavor to remove the ventilator. This will proceed based on how Dad tolerates the process. Once he is off of sedation and the breathing tube is removed he should be able to speak again. Dad has not spoken a word since Monday afternoon and I suppose this means he has three and one-half days of catching up to do. Be afraid. Be very afraid…

Today’s forecast calls for diminished storms of seriousness, giving way this afternoon to laughter and jokes, all at Dad’s expense of course. LOL

May smiles surround you and may you be infused with a renewed sense of wonder,

Lee

Friday
December 26, 2008
Boxing Day For Charlie
Boxing Day / Sixth Night of Chanukah / Shabbat begins at sundown

Apparently Dad takes Fridays off from being a superhero with super-human abilities. The staff cranked down the sedative he is receiving intravenously. After a while, he showed signs of stirring or restlessness. He tried to open his eyes, but they were unfocused. That was strange. It reminded me of college parties where one person always seems to overdo the drinking and when you try to wake them, their eyes open, but the elevator is obviously not serving the top floor. Normally, I am tempted to respond to this condition by painting someone’s eyebrows with toothpaste or tying the toes of their socks together. But instead, we just held his hand, petted his forehead, told him we loved him and hoped that, on some level, the love registered.

The staff also scaled back on the morphine. The goal was to raise his level of consciousness to the point where he can respond to commands such as move your feet or squeeze my hand. The staff administered a ‘breathing test.’ This consists of reducing the level of assistance provided by the ventilator to see what he can tolerate. He didn’t do so well. We’ll try again tomorrow. The staff says sometimes this weaning takes a few days.

Dad tried to cough as the sedative was wearing off and the staff says: ooh that’s good. They see this as progress and I suppose it is. But he grimaced and turned red in the face before and during the coughing attempts. It looked like discomfort or actual pain to me. I know some discomfort is to be expected when recovering from the medical interventions which have been provided to him. But I also know how much pain the arthritis in his spine has caused him in these past few months. This condition has been the one thing that has caused him enough physical discomfort to really discuss it.

There is this quasi-telepathic element involved when we attempt to discern what, if any pain he is in and to try to determine from where it emanates, since he can’t talk to us or even squeeze our hands. Then, there is the balancing piece where we want to try to keep Dad comfortable, but this goal must be weighed against his tolerating some discomfort where it could conceivably provide him with a chance of recovering. We also add to the mix, that he may not remember any of this once-he/if-he ‘wakes up’, so all the fretting might have been in vain.

In these moments, the matrix of factors we need to consider feels like a three dimensional chess board. And mind you, I am not even very good at checkers.

When looking at this proverbial chessboard, I also consider that, according to Dad, as of late, there have been discomforts aplenty. Occasionally he speaks about the Witch Fire that claimed the family home last year. He still held a certain sadness in losing a lifetime of possessions. Being surrounded by his books and toys gave his heart a sparkle. It was the feeling of security in owning tangibles and the nostalgic reminders of happy memories and the optimism of what might wait around next week’s corner – when he got better. All of this was the emotional wrapping paper of what was owned. But if he couldn’t have the tangibles back, at least he could pursue his lifelong passion for learning. Except that, it sure was becoming hard for him to learn in these past months. He couldn’t remember things like he used to. Even the word “angioplasty” gave him struggle. All of the doctor’s names, the appointments, the procedures – too much for him. He had to give up driving and you all know how the ferocity of his willpower and ‘can do’ spirit blew the sails of his life force.

So in this difficult time, we are charged with weighing what is needed to recover against that which awaits upon recovery. The blind checker player competing with the Angel of Death upon a three-dimensional chess board – one that is moving constantly.

We all spend a lot of time holding Dad’s big hands and relaying your names and well wishes into his ears. His hands are warm now, but the stillness of his body over the past week has resulted in their swelling. The skin is stretched tightly but oddly enough it makes his hands soft to hold.

I’m certain of little these days. But I am 100% sure Dad would be so happy to know you all are thinking of him and holding special spaces in your hearts and prayers. He might tell you he doesn’t believe in G-d and that prayers are hogwash. He might explain, briefly, in let’s say three hours, that you get more out of praying for him than he does. But prayer is also about listening. And each of us has listened to Dad and in so doing, we have learned something that helped us to be a little better at traveling the road of life. The possibility of giving to us in this way – that was Dad’s only prayer.

Blessings and Shabbat Shalom.

Lee

Saturday
December 27, 2008
Charlie and the Breath of Life
Seventh Night of Chanukah

It’s Saturday. I’m sitting with my beloved, Dan, on the outdoor balcony of the hospital cafeteria. We are enjoying lunch in the warmth of the first sunny day we’ve seen in a long time. Here in San Diego, we are rather accustomed to sunny days and even four or five days of rain is a long time. I am mentally reviewing the events of the week. I realize that if I am in the hospital, this is a good thing, because I have a reason to be here. Dad is surviving. But at the same time, if I am here in the hospital, that of course is a not-good thing as well.

When we arrived at the hospital, we were greeted by a very small increase in Dad’s consciousness. His breathing was going well. The machine that assisted him was turned way down, yet the number of breaths per minute and the volume of air he was moving was good. The results of the blood test showed his breathing was effective. Dad’s eyes were still super unfocused and he drifted in and out as he chewed on the tube and occasionally tried to swallow. He responded to the doctor by opening and closing his eyes. He tried to open his mouth when the doctor asked him to do so. But no response was made to requests for Dad to move his hands or feet.

It’s perhaps difficult to pinpoint when a patient is ready to come off the ventilator and will breathe for himself. But since Dad showed all of the signs of being such a candidate, the tube came out in the morning. Dad had difficulty breathing at first, but staff said that after having an assistive device for several days, that was to be expected. All we could do was to wait and see.

This is definitely the place in the movies where there is the sound of a clock ticking or orchestral music accompanied by soft-focus flashbacks of happy times.

By afternoon, Dad continued to struggle with breathing. We went home for a few hours of sleep. The medical staff placed a C-PAP mask over Dad’s mouth and nose so he could have some more support for breathing. I have made a decision on Dad’s behalf, to refuse to permit re-intubation. I have also agreed, on his behalf, to the administration of morphine. One effect of this narcotic is to depress the respiratory system. The hope is that Dad can relax into breathing and get some rest. However, use of this narcotic can also hasten death. We feel ourselves slowly sliding into the land of No Good Choices. Or maybe we have been there for some time and are just now fully waking to our reality.

There comes a point in health care where the desire for comfort takes precedence over the support of healing. I am constantly checking in with my own ideas and watching my emotional responses as I see him struggling to breathe. My goal is to be constantly mindful of how I feel, so as to clearly distinguish that sense from what I believe Dad would want.

The fact that Dad has not made much improvement in consciousness gives rise to the possibility that he has incurred some amount of brain damage as a result of the cardiac events on Monday. While no one knows for sure, I notice that the staff is beginning to float that idea. Last night, I heard the terms ‘hospice’ and ‘palliative care’ raised for the first time in this visit to the hospital.

In these past few months, Dad chose to place substantial trust in the wisdom and expertise of the medical professionals that gave him care. I suspect that part of his decision to do this stemmed from his difficulty in understanding the complexities of his situation. Help was always available to him, help to sort out this complicated stuff. But he was not interested in help. Never had that habit much, wasn’t about to take on any new habits either. I sometimes disagreed, but it wasn’t my choice to make. Maybe it was the warrior’s way of gracefully exiting the battlefield, with dignity intact.

Sunday morning I will meet with the staff in whom he placed that trust and we will continue our discussions about what might lie ahead. I will set aside the needs of my heart; the vast possibilities dangled in front of me by my mind and will instead imagine listening with Dad’s ears. I will do my best to apply appropriately both strength and kindness in the decision-making process; to find balance between the input of others and the still, small voice within that sings the truth to us in our quiet moments.

The blessing that has wrapped me this week is all of you who allow me to think I am doing you a favor by giving voice to these musings. In fact, by being there to listen to my process, I feel great love and support. It is I who receives by your presence in my life. I offer my gratitude. And on behalf of that bigger-than-life man who is still a ‘Daddy’ to a fifty-year-old woman, for the love you have given his daughter in a time when he could not, I offer his gratitude as well.

Sunday
December 28, 2008
Charlie’s Gone On, But Still Keeps Charmin’
55th Anniversary of Jeanne and Charles
Eighth and Final Night of Chanukah

It’s been a long Sunday. Today we said good-bye to Dad. We held his hand most of the day. I told those in the room that I was afraid to watch him go, afraid I would faint, afraid the strength that had carried me to this moment would suddenly fail and I would falter. Yet in those final moments, I knew I had the support of the family in the room, and also from a family that spread out and crossed state lines, extending beyond international borders, and also even beyond what some call family to a whole circle of people that honor me with their friendship. I held on to the e-mails and phone calls and also to thoughts of those who were not able to reach out. I knew I was being carried around the world in a vast and often digital network of life companions. Even Dad’s name had been written on a scrap of paper and, for all of us, placed sacredly in Israel’s Western Wall. I was also held by the power of my Dad’s teachings, you see cousin Ty had reminded me this morning that my Dad “had a way of making you understand that all limits are self imposed.” With all that in mind, I was able to, once again, choose to step outside the self-imposed limitations of my own fears.

Dad’s passing was slow and gentle, peaceful and comfortable. In the ease of that moment and throughout the day we all gave words to the gratitude we felt for what we had received by having been a part of his life. In fact, he’s already sending gremlins from the other side to remind us of the importance of laughter. Let me know if you get one!

Tonight we put the last of eight candles in the Chanukah menorah. Dad went into the hospital on Monday, the first full day of this Holiday of Lights. Miraculously and perhaps metaphorically, his divine light held until the kindling of the menorah was at its brightest.

Tomorrow will be the first day of a life where my father, our Charlie, exists as only a memory. Charles Francis Fowler, Jr. was not always an easy man. I feel compelled to speak that truth so that many can begin to put it to rest as well. I believe his intentions were always honest and pure, and that deep within that gruffness, his heart was ever drawn to want only the best for us.


Now in December, as we all begin to live in the season of days growing longer, the darkness will slowly grow small. If we are mindful, we can experience, now and always, the light that shines larger and warmer, day by day by day. May our deeds give honor to the best of who Dad was. May our love for one another be a reflection of the special love he had for each of us.

***
Per his very clear and emphatic requests, there will be no funeral. Dad’s body is being donated for the betterment of humanity – the donation thus becoming a mirror of his life’s most important work.

I have assembled a few photos of Dad and you all. I am missing photos of many of you and I am sorry if you are unintentionally excluded. Please forgive. I think Dad had more photos, but lost them in the fire. So, feel free to send me any photos you have, though bear in mind there are no plans for a major motion picture. (at this time...LOL) I will create a site for us to post memories and more photos of Charlie and family. This digital get-together will serve as our e-funeral. It can be a vehicle through which we remain connected to him and to each other. He would have loved that. Please see: http://www.youtube.com/watch?v=o6a4zwsWvVs