The other day, we asked Vernon how he felt. “Superimposed” was his answer. What a remarkable way to put it.
su·per·im·pose
ˌso͞op(ə)rəmˈpōz/
verb
place or lay (one thing) over another, typically so that both are still evident.
I’d say that even in his state, he sometimes still has a gift of saying the most unexpected, but exactly right thing.
That’s probably what dying feels like. Superimposed. Wow. I love his mind, even the little left of it.
It wasn’t long into this hospital run that I knew: if he made it through and death didn’t come this time, it would be another time in the not-so-far future. It’s turning out to be this time. I’d waited to say anything here until I had confirmation from the doctors and after that, had contacted his family.
I’m sure I’ll write more about this fascinating, surreal, superimposed time in another post, but for now, here is the basic story.
It wasn’t exactly the infection in the end, but complications from the infection. It wasn’t exactly his kidney failure in the end, but complications with his catheters.
It was made pretty clear that Vernon would only be able to have dialysis a little longer, and only if I’m aggressive with more surgery. I’d already been informed months ago that stopping life support ( dialysis) would make for a gentle death for him. They say the body holds on about 8 days in hospice (though could be more or less) after dialysis is ended. I decided yesterday that this would be the most compassionate plan for him, as he had run out of options (run out of clean, usable ports.)
I stand by my decision as I’ve watched him get weaker and more confused the past few days. Today was meant to be his last dialysis, but already his nephrologist called and told me his numbers don’t call for dialysis. His body is already shutting down. In the end, it wasn’t a decision at all. He was already dying despite what I felt was a choice. I am glad for that as it leaves no doubt that this is the right time and we are ready.
Joe has requested that Vernon stay in the same room with him as he ends his days on hospice care. Absolutely, I agreed. Maybe Joe needs this time too.
I let Maki and his mum know the other night, and they were able to get him on an earlier flight. I’ll pick him up at LAX in about two hours, bringing our good friend Chris along for moral support. Then we’ll stop by the hospital. I believe Vernon is holding on for Maki, the heart outside his body. Justine is visiting cousins with my mom, and she’ll be home Friday. I haven’t told her yet, but don’t feel I need to.
Thank you to everyone for caring like you do. I feel very loved and lifted. Just a little superimposed.
And very sad.*
*(Especially since we didn’t make it to our 10 year anniversary in three weeks. That’s the sad thought that always brings tears the fastest. As if it matters…but somehow it does.)
Vernon’s surgery went well this morning. He had his dialysis catheter removed, a new one put in his neck temporarily, and in a few days, he’ll get a new catheter, unfortunately in the same place as before. Since much of the infection is based in the catheter, it’s not the ideal situation. Its possible we can use the arm fistula that was placed last summer (the one that still hasn’t actually been used) for future access. but for now, his arm is too swollen. Vernon is running out of ports, and he needs dialysis.
I stayed with him today today from about 10:30 to 4;30. Before that, I brought a coffee over to Joe at Mesa Verde. Turns out he has a UTI as well, poor man. I knew he would want to know as much as I do about Vernon. We also need to ensure they keep his bed for him there, as its possible he could be in the hospital longer than a week (which is the typical ‘hold’ time.) It was a long day but there were lots of special visitors to break it up for us.
My mom came by first thing, when he was just out of surgery. We have a lovely top floor room with an amazing view of the Marina. (No pic this time; I’ll take one tomorrow perhaps.) Vernon didn’t really wake up for her, but it was nice for me to enjoy her company at any rate.
A little later, our friend Derrick came by with is guitar and gentle words.
Vernon said “Beautiful” after a song, but that was the most we could get out of him. He was still pretty sleepy.
A little later, the Logies stopped by. Vernon could only handle a handful of songs, but I know he enjoyed them. We knew he’d finally come out of his sleep when he asked about pain medication.
We had another surprise visitor today. The dialysis nurse, who introduced herself as Heidi, said she remembered us. Apparently after training, Vernon had been her first patient when he was still at Mission Hospital. She thought she remembered it had been his last day there too. She recalled the walls with all the photos…and even his name when she saw it on the order. Just a little nod to how long it’s been and how many circles we seem to roll through.
It was a longer than usual day with Vernon. I could have left earlier, I’m sure. I’ll pace myself better this week. But when I left, quite zapped to tell the truth, I asked the nurse for a report on his cultures: “Have they found the main source of infection yet?”
“They found staph in his arm, but that’s nothing to worry about. And he doesn’t have Sepsis.”
“Really? Ok…that’s weird. But good, right?”
“Yes, that’s good.”
I still don’t think we are the bottom of this round. But I’ll find out more tomorrow….hopefully. And I’ll pace myself better too. It’s been a long weekend.
It was a typical hospital day, I guess: lots of waiting around, passing information back and forth, watching Vernon sleep, walking the grounds aimlessly, trying to read my book, since I finally had the time. I did see my friend Talar a couple of times, which was lovely. She’s a social worker there, so she can make time for visits. She even introduced me to some passing chaplains, one who had known my parents in the past. Hospitals can make for surprisingly small worlds.
This morning, I got news that Vernon would likely be having surgery on his hip, to clear out a perceived abscess. He needed a blood transfusion…and I was finally give information on his Type of blood that I’ve been asking about for a long time, so there’s that! (Didn’t it used to be that people couldn’t get married without knowing the other’s type of blood? More proof that we are modern kids!)
When I arrived at the ICU, Vernon was complaining of pain in his stomach—so much that he was moaning loudly. He couldn’t stop. After a pain killer, he said his pain had dropped to an 8/10, and he kept up his moaning. I was glad I got there when I did: though it’s hard to watch your loved ones go through pain, its good to know they aren’t by themselves. Even a Dilaudid, administered next, didn’t bring him down for awhile. He finally arrived at a six, he reported through his moans. He doesn’t complain about pain much, so when he does, you know he means it. At a loss for what else to do, I pulled out the 23rd Psalm, which always seems to bring comfort in hospital rooms. I read it once to him: he became quieter. I read it twice: I could hear almost a snore. I read it three times for good measure, to make sure he was asleep…and maybe I needed to hear it again too.
He slept for a few hours after that. When he woke up, he was no longer complaining of pain. He still seems confused, but more peaceful. Dr. Leiber, his orthopedic surgeon came in to look at his hip (where he had taken the bone graft exactly a month ago today) and decided the infection couldn’t be from that area, but in fact the area that the X-rays had pointed out was actually a healing (and healthy!) bone. So Vernon’s surgery was cancelled for tonight! This also means that he may be moved out of the ICU to a less-intensive area as soon as tomorrow.
Blood cultures are still being taken and tested. The popular suggestion at the moment is that it’s probably the dialysis catheter that has been infected. It sounds like it’s MRSA this time too. But watch this space, I’m sure we’ll have conformation soon enough. I was also told that he is doing much better than he was yesterday. So the antibiotics (and prayers!) are kicking in already. I left shortly after the dialysis nurse hooked him up to the machine for his afternoon session..
And now that I’ve got through the day and finished this update: I get to watch the Opening Ceremonies of the Summer Olympics! This is what I’ve been looking forward to all season. Did you know there is a Refugee Olympic Team? I just think this is the best idea! I’ll be rooting for them (along with my own country and the UK and Norway!) I LOVE THE OLYMPICS, can you tell?
Vernon was sent to the ER at Hoag from Dialysis this morning when his temperature and heart rate both shot up. He had been nauseous and had a high heart rate yesterday too, and the doctor was hoping to look at him today after Vernon’s appointment. He’s been acting confused all week. But then, that isn’t necessarily a sign of anything new with Vernon. It just made me sad because it seemed he was disappearing again.
Once at the hospital, it was quickly confirmed that he does have Sepsis, though as of yet, they haven’t found the source. In the meantime, he has been placed in the Neuro ICU for treatment with broad-spectrum antibiotics to fight the infection. I was told by the nurse there that he’d be there for ten days, but since then, Dr. Hong has called to inform me that his vitals have already improved and that he’ll likely be moved to another unit soon. Maybe the nurse meant that Vernon might receive treatment for ten days. It’s all still up in the air until they find the source of infection, I suppose.
I know people have been sending up their prayers. I can feel them! I was very concerned about this visit. The word SEPSIS alone frightens me as I know how serious it can be. The last time Vernon experienced it, he lost his ability to swallow/eat/drink, and it took months to recover mentally. But now I am feeling positive and hopeful, actually for the first time in the past two weeks. He’s in the best place for him now. I hope they uncover and solve this issue…and some other medical mysteries, while they are at it.
“You don’t have a soul. You are a soul. You have a body. ” (attributed to) C.S.Lewis
I would add: You are a soul. You have a mind.
Its been a wild ride with Vernon the past couple of weeks. Dialysis at the new center is going well, though there have been times we need to cut his time short because of his outbursts and impatience. I believe he is off his painkillers now, for the most part, and has been sleeping better at night, according to Joe. His his arm, though still somewhat swollen and deformed, seems to be settling down a little more.
His behavior and awareness still can change by the day. Last week, for the first time, he insisted I look for/order a ticket to England f0r a day’s visit (he thought we were presently in Japan.) He insisted he could go all by himself. Yesterday, he wanted to fly to America FROM England—this is a more typical argument from him.
In my own life, I’ve been struggling with discontent. Although some people say I “deserve” to have those feelings once in awhile, I don’t like them. They can be other people’s behaviors and attitudes that frustrate me, as well as the injustice of certain situations. I won’t go into detail about all of that, but I’ll admit my guilt in harboring resentment. I’m at a point where I realize I have to deal with some of this and find new approaches to ‘letting go’ for the sake of my own sanity and peace, now and in the future.
I mention this here because I brought a book to read aloud to Vernon this week that I thought also might help me work through some of my issues. Vernon seems to follow abstract thought better than a storyline sometimes, so I figured it was worth a shot. The words seemed to relax him…and I could feel it working on my own mind as well.
Yesterday, I brought the book again, but since he was happy to just listen to Tycho on my headphones, I read it to myself, writing thoughts down in a notebook for later. It was one of the more peaceful days we’ve had, both of us doing our own thing, but together. From time to time, I would look up from my notes and just practice being present with him.
I was able to look past his broken body, his misaligned eyes, his disability, our history, my expectations, our losses and see HIM. All the rest of him, all the MOST of him. I was thinking about how we are so much MORE than our opinions and our plans, our hopes and our fears, our functions and dysfunctions, the way we look, the way we sound. It was remarkable to recognize this wonderful spirit of man sharing the same space as me, while watching his lifeblood literally flowing on the outside of his body through the dialysis tubes. THAT is more who he is than a brain damaged invalid with kidney failure. Talk about an inner life! It’s all on the surface with this guy, if I’m willing to look a little further.
I wrote in my notebook about the moment: “I see you beyond your eyes. I see you beyond your body and face. And I am grateful to be with you here today.”
I smiled at my husband. He looked up at me, smiling dreamily back. He took off his headphones, taking stock of the information in front of him. He said: “I see your ability to read things and write things and collect information. I now see who you are: someone who wants to learn by finding knowledge on your own. Not everyone can do that. You are able to do something that very few people can do. I wonder if I’ve noticed that before. It makes me love you more.”
Now, while I won’t agree that not many people can do this, it was touching for him to express this appreciation back to me, especially since I had just taken the time to really see him. This is the gift of being present with someone. What you give can be mirrored back to you. Two souls connecting despite your differences and disappointments.
It was a powerful experience, enough to help me today in the middle of an election cycle that has everyone feeling they are right and therefore others are so wrong. It’s the dialogue of dissent and it’s very hard to avoid, especially if you feel passionate about certain issues. But I am going to try to practice looking beyond all the things that identify us to each other. I know this is possible. And that love and joy and peace can be found there. We are more the same than we are told. We are each souls. We are children of God. We have more in common than we take time to see…but when we do, it’s very good.
I’m still dealing with my forgiveness issues and my resentments and my pride and my letting go. But I would say yesterday’s experience was worth writing down and remembering. A note to self. People are always bigger and more alive than I understand. May I continue to see that.
A special cover of Vernon's fav song 'Waterloo Sunset' by friend and singer/song-writer Ian McGlynn. All proceeds support Vernon's recovery! Donate what you can and download a beautiful song in return.
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