I got a call this afternoon from the Dialysis center. Vernon’s chest catheter had been acting up for a couple of weeks, enough to close some of his sessions early. It had been getting clogged—at least, that was the description I was given. After that, I don’t know how to elaborate. So today, after another faulty session, they called me, saying he would need to have it fixed before he is able to be dialyzed again. He was eventually sent to the ER at Hogue Hospital, yet again.
I had to wait till Maki came home from school so I could leave Justine with him. My parents would normally be my go-to’s, but they have left town for the next few weeks. It’s fine though, we are Hospital Pros, and if the hours come together right, we can handle it together.
Speaking of being a Hospital Pro, though…I used to feel slightly giddy about going to Hogue. Its such a nice hospital, and Vernon always gets top-tier care when he is there. But this time, I felt annoyed and tired. “Are you KIDDING ME?” My insides cried. “Again? To clear out some arteries that only keep him doing Dialysis, which he hates, and takes constant work on my part just get sitters for. Is any of this really HELPING? Or is it just keeping him alive?”
That came across much more negatively than I actually felt it. It’s not that bad, but it does feel like a lot of work for very little result most of the time. I feel sometimes like a person trying to generate electricity via bicycle.
So anyway, once I was able to leave the house, I managed to get there quite some time ahead of Vernon. It was very crowded in the ER, “even for a Monday,” I was told. It made for some good people watching though, and I played the game I always play in hospitals and airports: “What is THAT person’s story?” Here is an example:
ER Waiting Room
Actually, that guy was there to help his mom, who was sitting in a wheelchair nearby. She had been waiting for two hours to have her name called. All I heard from her was that her mouth was dry because she was on so much medication but she was unable to drink anything because the doctors needed to run tests. Apparently thirst isn’t just for Vernon these days.
One thing nice about ambulance travel is that, at least at hospitals, you get in through the back door. I had been waiting for Vernon to get rolled through the front doors, but by the time I asked again, he was already inside in a cozy ER bed of his own.
a room of his own
To make the story shorter, after explaining the issue as best I understood it, the doctor eventually told us Vernon would not be admitted tonight, but should return tomorrow for the Radiology Dept to do their magic on his tubes. The Radiology Dept does not work after hours.
So I left him, asleep. At least he had fallen asleep. A phone call with Joe told me that he has been sleeping since I left him yesterday (and the dialysis session earlier today) So something is off. I hope that once they fix this clogged artery issue, Vernon’s face and left side of body will stop swelling so much. That’s an area the doctor has been looking into without any clues so far.
Tomorrow is another (long) day.
On that note, here is some fun from the Radio (logy) Dept. See what I did there?
It was a tough week. The frequent ups and downs in Vernon’s recovery and the effort and time trying to build him up to better levels of comfort and clarity has been exhausting, to be honest. I’ve allowed some unnecessary dramas to get under my skin as well. I don’t know if its temporary burnout or if I should simply blame the heat. I expect its both.
But the wild heat, as energy-sucking as it can be, has given driven us to use the pool in the evenings. It’s actually the community pool, where my friend Sandy lives. This is not just any community pool though: it is filled with warm salt water, often empty of other people, under the palms and the stars. I don’t know how many evenings we have spent there over the past month or so, school nights and all. But its been quite therapeutic for us, so relaxing. Maki disappears under the water with a snorkel and a mask and happily floats or swims, just listening to the quiet of the water, and Justine is able to splash and swim out her extra energy, happy to have my attention again. Sandy and I can chat while stretching our our own limbs in the water with the kids. This is has been a remarkable cup-filler for us all. I love the closeness of it, just being together in water somehow seems to connect us a little more.
I think about how Vernon is begging for a drink of water while his family is immersed in it as often as we can be. There is a strange balance to it. I guess that’s water seeking its own level again. It does that so well.
Everything was good. At school, I had three “F”s, two “D”s, and an “A”. At home, I had a stepmother, little sister, and a dad who loved me. We had also recently got a new addition to the family, a 1977 Vespa. To my Dad the Vespa had become an obsession; every time we went out, it would be to a hardware shop so that he could get a new part for his new child. These constant trips out were great—the thing about most hardware shops is they usually sell really good candy, so for a couple months, my life revolved around constant snack-runs. I realize now that it was never about the food, I just enjoyed spending time with him.
Life does this great thing in that when you’ve gotten into a nice routine that you like, it starts pelting metaphorical rocks at you until you are left on your back without the strength to get up. I had a nice routine—I never did homework, went for constant snack runs, took guitar lessons, and occasionally I would create a piece of art. Everything was good. But then , as you might have guessed, the metaphorical rocks came flying straight at my face.
On May 23rd, 2014, my Dad picked me up from school. When we got home, neither my stepmum nor sister were there; this would give me some time to read (or well, to do whatever I wanted) as my dad was leaving almost immediately to go mountain biking with his friend. I didn’t think much of this as it was something he did often. After my Dad had been gone for a while, my stepmum and little sister came home. They talked to me for some time (they both have a gift for talking, which could also be perceived as a talking problem, but after living with them for awhile, you learn to listen without actually hearing anything.)
Thankfully, they were interrupted by the doorbell. I thought my Dad was finally home so I ran to get the door and swiftly opened it. The person standing there was not my dad but a police woman dressed in the usual deep green uniform. As soon as my mind had registered what I was seeing, all I could think was: “Why? What did I do?”
I was frozen. After an awkward couple of seconds, she asked me in a sad voice, “Is your Mom home?”
Of course my mother wasn’t home. She lived in New Zealand, but of course that’s not what she meant, so I called for my stepmom and she came. As soon as she had gotten to the door, the police lady started to speak once more. “Does Chris Adams live here?” she questioned.
My stepmom replied, “No, but his friend does.” She was referring to my dad. Chris was my dad’s friend that he had gone mountain biking with.
“Well do you know who the blue scooter belongs to?” the policewoman continued.
“The scooter belongs to my husband.” My step mom’s voice was trembling. The constant droning of the freeway seemed to be louder than before. The sound was growing, and along with it, my fear. The droning of cars was so peaceful though, so it was all I wanted to hear. I didn’t want to hear the conversation that was unfolding in front of me, but that would have been impossible.
“Was there an accident?” She asked it, the one question I didn’t want to hear because I was afraid of the answer. I tried to run away, but I was frozen, unable to move, and the droning of the cars was suddenly gone, leaving only an obnoxious silence.
Yesterday morning, I met Vernon and his ‘drivers’ at the Fountain Valley Medical Center so that once again, Dr. Duong, the Vascular Surgeon might check his AV Shunt that was put in last April. His first check-up was in the summertime, it still hadn’t healed enough, and with school starts and more dialysis hours throwing appointments off until this month, Dr. Duong revealed that of the two branches of his fistula, only one had merged properly to the artery—and that one had settled too deeply within the upper arm to be reached by needle. Therefore the doctor suggested another surgery to fix the problem. After that, it would take another three weeks to heal properly.
Examining the Shunt
I hate to admit it but I believe sometimes doctors run around and around with various procedure and medication ideas, hoping something will stick. A lot of money is spent on keeping someone alive, and half the time, its just hopeful thinking, calculated risks. Unfortunately, Dialysis is a necessary evil and we have little choice but to keep moving forward at the various doctor’s suggestions.
It could be a blessing that his arm isn’t ready yet though. The Dialysis nurses and technicians are concerned that he won’t tolerate the pain and poking of a daily needle or that he will become agitated as he so often has been and start grabbing at the wires in his arms.
I am hoping to see a more consistently relaxed version of Vernon as we work with the mat and the oil. So far, there is improvement, but there has to be enough improvement that the staff and doctor agree to let him sit longer per session. Also at the moment, when I go, I can just get back in time for Justine’s school pick-up, this would change if we add more time. So we need to make sure it will work if we are going to change the schedule again. Getting back our fifth day could be problematic once we give it up.
in the drs office with an emt
He was great, despite unlocking the seat belt too often to be safe, and I did notice him winking at me a few times. No picture, but it happened. And he admitted it too.
Next stop was the Dialysis Center itself. He was still great, which was unexpected considering how long he had been up, being transported from place to place. Not only did he wink at me in the Drs. Office earlier, he wanted to kiss me on the lips over and over again. I must say I did feel special: he still has a way of doing that when he wants to. It’s good to know that a major part of who I fell in love with is still alive and kicking.
The problem is: WATER. He still wants water so much. I could get in trouble for saying so, but I have decided that my time away from the care home is my opportunity to give him water. We do little sips at a time. And if he holds his head just right, chin tucked low and to the right, he can swallow small sips without even coughing. I’ve asked for more water at the care home, but I know he tends to dislike tube feedings so I think often the carers give him just the minimum. He does make it hard for them, I know.
Yesterday, I came in with ice water for him and a coffee for myself. He immediately noticed the coffee in my hand, as he always does when I have one. I’ve been taking my coffee black since he lived with us, but still, I let him have a small taste.
He hated it and made the funniest faces. The session went on, and almost two hours later, he said, out of the blue:
“I really regret that your coffee tastes so bad.”
It was a disappointment…so much of one he remembered it for two hours. That’s good, isn’t it?
Today, I fed him water again. It’s so hard to deny him this simple thing, especially as he begs for it. As Ive said before, I do believe this is a primal urge that makes one feel ‘human’ when satisfied. I told the on-duty nurse about this idea as she was checking Vernon’s numbers. I told her I believed it would help him improve cognitively as well as physically (especially with so much time on the detoxing mat.)
A little later, Vernon said: “You know, what you said earlier about the water really made ssnse to me.”
I had been giving him little super-sized dixie cups, half at a time, coaching him through the side-swallow, although most of the time he seemed to remember before he got confident and started coughing uncontrollably.
“Because when you think about it, the amount of water is really not very much. It’s only a plastic thimble.”
After that, he kept asking for a mere thimble of water.
I try to slow him down, but how can I not oblige a little?
I’ll be back tomorrow with the PEMF mat, expecting good results yet again.
One more thing…I thought Vernon had been gaining weight recently as his face has filled out so much, but I am still concerned because after being weighed yesterday, I found he was still only 102 pounds. He doesn’t look like it in his face though…so I am concerned there may be some something else going on. Also he was very often confused in his words again today, more than he has been lately. The doctor has ordered tests and an x ray.
“To be broken is no reason at all to see things as broken.” —Mark Nepo
I probably shouldn’t get too attached to Sunday visits, because I can’t expect the Logies (whom Justine has dubbed “the Beatles”) to show up with at least part of the family every week forever! I do know not to get attached to anything to much, especially if it involves others’ schedules. They share of their gifts so freely and humbly—and I know our family is not the only one to benefit. But most Sundays of the month, they have been driving 35 miles back and forth from Whittier. Sometimes when I’m not even there. In fact, some days we are the third on their list of homes and hospitals where they have ministered to the sick and bored with their contagious musical joy.
I love that my kids enjoy those afternoons too. The Logie kids move in and out of singing alone/together, painting, playing cards. It’s great for Maki—especially as he doesn’t like to feel put-on-the-spot for long—and even when its just us visiting, he can feel a little trapped. With the Logies, there is always some activity going on. I think Vernon enjoys that vibe most too. He can just listen to the in and out of activity around him as well as the music, which we know he loves. He doesn’t have to answer or ask questions he doesn’t come up with on his own. There is simply a lovely bubbling buzz of love around us all.
I had brought the mat up and Vernon did well, though he felt so energized afterward, he got frustrated waiting for the CNA who would transfer him to his chair. He crawled out of bed and nearly back into it by the time she got there. By then, he was alert enough to take out his frustration on me…it’s nice on those days not to be the only person to entertain him. He had others waiting outside that he could be his good self with.
Once seated, we couldn’t roll out fast enough. “I want to see my kids,” he demanded. And once we got there.:”Don’t push me in the shade. I want the sun!”
Well, there is something about a man who knows what he wants.
He asked Maki to sit near him. So he did.
“Isn’t my son Maki so beautiful?” He asked, overcome with feeling toward him. I know Maki was moved too.
A friend saw this picture earlier and pointed out: “Like father, like son!: Even look at their hands!!!” And she is right.
Justine entertained herself and everyone else with her newfound interest in face painting. I don’t have a picture of Susan here, just to save her some dignity…she was Justine’s first victim and looked like someone trying to camouflage herself in a Matisse cut-out. In other words, she looked GREAT!
Here is Vernon drinking water…without coughing. Vernon did order a Fosters lager, specifically, but water was all I could get ahold of. I probably shouldn’t post it here, because I might be held liable, but he’s just so obsessed with water and drinking, its hard to always say no. It’s so hard navigating the worlds of what I think is right and what the professionals say. It’s best when we agree.
This sort of thing makes me reflect on the idea of prayer, of all things. If everyone who says they are praying for him means it, and if this has been happening in large numbers for almost a year and a half, at what point does it all come together to manifest the results we want? I don’t know the answer, obviously…I don’t even know if it worth asking. But what if?
What if when the medical fixes and suggestions stop working for him, we’ll find that underneath the surface, quietly yet perfectly, he was being healed the whole time? It’s a dream, maybe even a hidden reality, a little tricky to test it. But what if in this whole story, there is still a miracle waiting to happen. I’m speaking to my wish-like faith, which lately seems to wax and wane with the moon. It DOES come back though after the dark nights. Right now, I’m in-between and looking for reminders.
That’s why these Sunday parties have been so great. They aren’t just for Vernon, you know…though he is the guest of honor. They help ME see the miracles evolve and mature in, right in the eye of the storm.: The fact that we are in the eye of the storm, and not being tossed around, the fact that Vernon seems weird in a place like Mesa Verde, too young, surrounded by music and children and laughter, when most people who have experience severe trauma like his, have died. He is alive. There is music, dancing, artwork, children, friendships. We are STILL here 15 months later! We are smiling. We are crying. We are growing. We are learning to live outside of fear. And if that isn’t faith-building, I don’t know what is…
Apparently, having FAITH doesn’t mean getting what you ask for. But it does help with the belief that it will all work out alright in the end….and most likely the whole way through. Sometimes you have to fight for it though.
“Now faith is confidence in what we hope for and assurance about what we do not see.” —Hebrews 11:1
Bear with me as I tell one more anecdote. When I went to fetch water from the cooler, I saw Anita huddled in the corner, obviously feeling blue. She was trying to cut a hole in the toe of her stuffed slippers because a blister on her foot had grown too painful to cover. She was so sad…she always reminds me that she is almost completely blind and deaf and on top of that 98, years old. She is usually so sweet and cheerful, but when she is down, you can see the black cloud hanging over her from yards away. I sat with her a bit, listened to her talk about how much her body hurts in old age, and borrowed some sharper scissors from the receptionist’s desk.
As I cut away, hoping they weren’t some expensive pair her family had bought her as a gift, she told me about how despondent she was when she had first arrived at the home. She had felt sorry for herself until she discovered there was a rose garden just outside the wall. That became her place of refuge and her purpose. We all know now how she sings to the flowers. She told me that one day when she was scolded for watering them with the hose, she took it upon herself to take 14 trips with her coffee cup full of water. They gave her purpose. They kept her going…for Anita, she isn’t getting younger, she doesn’t have family around, she is in pain…but these flowers are her answered prayers.
After telling me her story, she was ready to go outside and take in the music with her little foot snug comfortably into a customized slipper. The music was what I was really trying to get her out to all along. That…and the roses.
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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