Hero: a person who is admired for great or brave acts or fine qualities.
I apologize for the broken link that went out to our blog subscribers last night. I hadn’t meant to publish what I wrote, but used this space instead to work out some personal thoughts. When I realized 20 minutes later that it had indeed been sent out, I rushed back to cancel in in a panic.
It had to do with the feeling that the people who accidentally hit Vernon and began this whole chain of events and circumstances seem like missing important characters in the whole story. I am forever tied to these people and yet I don’t know them. And I have been given the strong impression that they have turned their heads from the reality of what they were involved in. I could be wrong though. I don’t need advice on how to deal with this…I’ve already been discussing it with the wise guides (legal and otherwise) in my life, who each offer different ideas.
Ultimately I’ll do what is right for me, I just don’t know what that is yet. It could take months of working it out privately in my journal. But you should know I’m not wallowing in anger. I’m looking for solutions, but I’ll share those thoughts when they are more clear to me. Nearly every character in our story has become a hero—being pushed past their own limits to find out they can handle more than they knew they could, and most often being permanently changed for better in the experience. But this invisible couple are still glaring characters in the story, and there needs to be some sort of resolution, though it can never be justice. I wonder, do they have a chance to be heroes too? Would they take it if given the chance?
Anyway…enough of that. I’ll sort it out more in private. This is just a little glimpse of where my mind is at the moment. It can and will change.
What a strange day. I was woken by the surreal news of our beloved David Bowie’s passing (or perhaps trajecting to another planet) and wondered how Vernon would react when he heard. He had been a big fan—as had I.
My car had a punctured tire so I dealt with that between Kindergarten drop-off and driving to dialysis. When I finally got there, I told him the news, expecting some big emotion. But he told me nonchalantly that he had already heard it on the news. I shouldn’t have been surprised: Joe loves FOX and CNN and his TV is often left on in their room. However, I was impressed that he remembered—that’s retaining a factual experience for at least two hours!
Mentally, he still seems to be in this keen phase he has been in more than not lately. He seems very present but he also has fierce mood swings. If he can’t understand or express something quickly enough he can become very angry, as if a switch was flipped. It keeps me on my toes around him for sure. To be honest, I’m extra thankful that I’ve never been in an abusive relationship, for I’m getting an idea of what some people must go through with volatile partners—it can make you jumpy, to say the very least. Still, I’m in no danger. I know it’s due to his condition and his frustration. The frustration is still a good sign though: I believe he is starting to understand his situation. And the truth can set a person free.
The year wasn’t set off right; we ended up in hospital more than expected. So this Monday, I set about making some calls. I spoke to the people at UC Irvine’s hospital about the kidney transplant list. We got a date set for February 16th. I’ll attend a class for a few hours and he will show up with VIP (handicapped) status to fun some tests early in the patient queue. I’ll meet him there for his appointment. (We got to the head of the line there because we have a few people who have shown interest in kidney donation.)
I spoke to the new case manager at Mesa Verde about Vernon’s doctor situation. She assured me the new doctor had tried to meet up with Vernon but he’s always at dialysis when he shows up. I can’t hold that against him, I know it to be true. I wish I could meet Vernon at the care home than dialysis, then maybe some intentional daily progress could be made.
After getting the new doctor’s number, I gave him a call and left a message. I also left a message with another lawyer I’ve recently been referred to. Justine’s gymnastics lesson was only an hour long so I had to squeeze in as many calls as I could. (Shame, but I’m only missing a few cartwheels, I tell myself.) I’m learning to keep a notebook with me, not that it always helps.
Dr. Kavorian called me back within ten minutes. I’ll admit I was impressed with that. We spoke for about 20 minutes staring with his swollen arm. He told me had met with him before but as he had to wait for him from dialysis, he’d gotten information about him from those who live with him: the CNAs and Joe. I told him about my trepidation over opiates and the like and how I’d been pursuing a more natural approach as much as possible. He seemed to agree with me and suggested Valproic Acid that he thought might help with Vernon’s mood stabilizing. It is used to treat seizures as well as bi-polar but it could be something to try on at least a temporary basis. Vernon is very sensitive, so I’m researching it now. I liked that he used the words “compassionate” when I told him about some of our alternative ideas. I haven’t met him in person yet, but I now feel I can have conversation with this doctor and that he is on our side, so that is good. I should have made that call earlier, if just for a couple weeks peace of mind.
I got taking a picture of Vernon at the dialysis center as was immediately shut down. So no fun pics of Vernon today.
But in honor of David Bowie’s passing, I pulled Maki aside tonight for a tribute-time. We listened to his music and made portraits. I can’t help dragging him into this day with me. He is 14— he knows enough about Bowie to know he was important to his parents and he knows enough of his music to appreciate it, despite the retro-camp.
I’m always surprised/impressed with what comes out of Maki’s heart and head. He was going for energy here and he nailed it. Here is my grown up, civilized version:
I don’t even know what song to post here, but I feel that I should, so I guess here is one. (Life on Mars is my fave but I don’t know which is Vernon’s favorite…everyone loves Space Oddity.)
Vernon was in good spirits and relatively sharp, and though his left arm was still somewhat swollen, he wasn’t complaining of the pain. He remembered the field trip in the night to the ER, though he assured me that it wasn’t his fault, but something that happens when he twists in the night. I could tell it was going to be a good day with him by the way he and Justine related when we first arrived. She has been nervous about him lately, but since he was full of kisses and love, she was able to relax and keep him company on her own for a bit.
One funny story that Joe and Vernon relayed to me: earlier one of the regular visitors to the home mentioned how handsome Vernon looked. “You have excellent eyesight,” was his response. He’d laughed along with them at the joke and remembered it later, even telling me how he could see the recognition of the humor in her face as she “got it.”
Our musician friend Chris Logie’s birthday was yesterday, but he continued celebrating with us today. Not only did the family bring face-paint, instruments, balloons, orgami, and knitting along, but they brought PIE…special soft-filled pies that Vernon could eat: lemon cream and custard. It was a great day. I’ll let the pictures speak for themselves.
Just a quick post this morning to say that I got a call around midnight, letting me know the Vernon was going to be taken to the emergency room at Hoag because he’d pulled out his G-tube. They didn’t have the right attachments to fix it, I guess, and they did tell me that the new Doctor had been called and approved the transport. (So that’s two emergencies in one week, I expect he WILL be getting in touch with us soon.) I asked the nurse how Vernon was acting. She said: “He was laughing.” Hmm. I prayed a little prayer and went back to sleep. I was too tired to worry.
I called the Mesa Verde first thing this morning. He was sent back after three hours, tube fixed. All is well.
I am concerned that he keeps pulling out his tubes. Hopefully this isn’t a “phase.” He has pulled out the G-tube several times of the course, but not in such close succession.
But he’s back. So it looks like our lives can go as planned today. We’ll be visiting him later, can’t wait to see him….though I’m always slightly nervous because we never know what we’ll get.
The charge nurse called last night to inform that Vernon’s arm was very swollen, so they’d contacted the vascular surgeon who’d worked on him Monday. He said it was common after surgery to have some swelling and that they should ice it and elevate it.
When I arrived this morning, his arm still looked very swollen, especially around the elbow. His stitches looked jagged and crazy, probably because they were still so fresh. He was sleeping soundly and didn’t want to wake up. When I did wake him, he rejected the mat, which he usually enjoys. He complained about the pain in his arm and “everywhere.” He lashed out at me when I got near, threatening to kill me. He’s never talked like that before even in his confused anger. So that was…alarming. Sadly, I just realized he broke my favorite necklace from my neck earlier…sigh.
I asked the nurse to give him some pain meds. That calmed him down some. But I was worried. Although Vernon was assigned to a new doctor when Dr Kruse/Dr. Dan left three weeks ago, I believe he was on vacation or something when the switch happened, and though he may be getting caught up on his new charges, he has yet to meet Vernon or myself. So basically we are between doctors.
“if you can’t get ahold of the doctor right away, I’d like him to be sent to Emergency,” I told today’s charge nurse. She talked to her superior and left a message with the elusive doctor, then called the ambulance company, who came within a half hour. I wasn’t sure it was the right move, but I was only going to be there for a few hours and if I could meet him at hospital, I thought I could explain what was going on to the ER doctors.
She asked me if we should send him to Fountain Valley, where the surgery was done on Monday. “What? No! Hogue. Absolutely Hoag.”
I once had a boss whom I would overhear on the phone from time to time, tending to his business affairs. He would often ask whomever picked up on the other end: “I’d like to be expedited to your superior, please.” I remember thinking, impressed: “Can a person DO that? I’ve kept the memory with me all these years and I recalled it today. That’s what it felt I was doing. Or maybe I was taking the role of physicians assistant (without a physician.) Dr. Dan taught me well.
The ER nurse was especially concerned when I mentioned his behavior. Of course by the time he emerged from his Norco-nap, he was more pleasant and answered most of the questions asked of him.
I left at that point to get the kids. I knew he was in good hands, though I did keep telling the nurse, “I’m really not prone to panic. I just needed to get him some care that I trust. And we have to catch things before they get worse with him. But really, I don’t even take my kids to the doctor when they are sick.”
She nodded, ” Better safe than sorry. It’s the things you think are small that are often the big things.” She was worried about her 5 year old child who was sick last night. It’s so good to be reminded that people in health care have families too. I felt better about my decision.
I got a call tonight that his arm ultrasound had come back negative for infection. I was also told that he’d had another violent reaction to one of the nurses once his pain pill had worn off, so it seemed that all of that was due to his severe post-surgery pain. I’ve asked that they make sure he has more of that for the next couple of days, but I intend for it to be only a temporary fix. I still feel strongly about having him on much heavy meds, and want to avoid them as much as possible. Still, he obviously needs more today.
So that’s another day down in the life of Vernon and Allison Adams. Oh…and also I saw a massive rainbow over our street.
I saw one yesterday too. You bet I’m keeping track.
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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