When I arrived this morning, Vernon still hadn’t opened his eyes for anyone, but his blood pressure was stable and the signs of recovery were good. He is on a much stronger antibiotic than before in order to kill off the infection this time. Let’s hope its the last one for awhile….or ever!
The problem is: his kidneys aren’t producing urine, but they are producing just enough fluid for bacteria to grow. Oh, how I am beginning to appreciate the amazing machine of a normal, healthy, working body. When all is well, most of us don’t even know (or need to know) what’s going on inside of us….and what a blissful state of being that is!
Anyway, he is doing better, and by the end of my time there, his eyes were open and he was showing signs of listening with occasional words thrown out. In his moments of clarity, h e was incredibly emotional when he did say something, maybe picking up on part of a conversation he could hear in the room. (Lois and Marcia came to visit and he responded a little to them.) Most of the day, he was still unresponsive to me or the nurses. But I’m told he will show more signs of recovery by the day. It’s marvelous that even in his state, he still has access to all three therapies, even if there isn’t a lot they can do with him at the moment.
Strangely to me, the way he was acting to day was very much how I imagined he would act when he first woke up from coma. It was a bit like being in a time warp: back at a hospital with all the wires and beeping monitors, with him coming in and out of consciouaness, emotionally speaking nonsense as if he life depended on it, as if he had some kind of message. So far, no hidden secret from the Beyond. He did mention an aunt Margaret, that he used to call Auntie Peggie, for example. I’d never heard of her, but she sounded so special and important, as he’d shed some tears as he spoke her name, that I wrote his sister to find out about her. She’d never heard of her, either. Marcia had been telling a story about a family member named Margaret, also called Peggie, and Vernon had picked up on it, that’s all. Serves me right for thinking everything he says will be profound. That only happens in the movies, apparently…and in other patient’s waking moments, perhaps.
Not only is he improving, but we have been assured that Vernon will be in the hospital for long enough to secure the next level of his Medi Care, which is more good news. You’ve certainly worked hard for it, Baby!
“Everything that you are going through is preparing you for what you asked for.”
I can’t find who originally said that, but a friend mentioned it a few months back, and I’ve been dwelling on it ever since. Today, more than ever, it rings true.
Last night’s better judgement (and Maki’s second opinion) had told me not to post this picture of Vernon, because it wasn’t very flattering.
It’s not flattering, but I’ll post it now in order to show how out of it Vernon has been with his current infection. Add extreme lethargy, and you have a better idea. It’s pretty bad.
So bad, in fact, that at 4am, the care home decided to call 911 and send him to the local hospital because among other issues, they could not raise his low blood pressure and they were concerned his condition might worsen.
Wonder of wonders, my dear friend Talar is a case manager at Hoag Hospital, where Vernon was sent. And she was able to greet us at the door. She even let me use her parking pass! Instant privileges!
Talar was amazing. She knew all the staff we passed and introduced me to everyone who was helping with Vernon. Doors seemed to swing open at her approaching footsteps. And the hospital was beautiful. Though Vernon was too sick to appreciate it, his room windows had an incredible view of the coastline below.
Unfortunately, Justine has had a fever/cold for the past several days (Maki and I are still teetering on the brink) so I had to bring her along, rather than dropping her at school. Talar, in her sweetness, took her aside to the gift-shop in order to buy presents for Daddy’s birthday (today!)
Though Vernon’s friend Dave had initially flown out to celebrate Vernon’s birthday with him, he ended up being a huge help to me as he also was a great babysitter for Justine in the waiting room.
Back to Vernon. It was hard to tell exactly what was happening in the room while I was there, other than seeing a low blood pressure number and the nurse’s difficulty in finding a vein for IVs, what with all the other plugs and catheters already taking up real estate. He could barely flutter his eyes except in attempt to respond to our voices in the room (yes, Justine did make a masked appearance too…we hoped that would help his blood pressure.) He made some low pained moans sometimes, but other than that, he seemed completely out of it, reminding me of his vegetative state. But the kind doctor called me tonight with a general update. A CT Scan of the abdomen shows a urinary tract infection with residue in the kidney and also a small infection in the colon. The antibiotics would leave him particularly lethargic for awhile, but he should show signs of improvement soon. She was concerned, but encouraging. She said that they will monitor him at this unit until he is ready to move to a less-acute division. She expects it to be at least a few days.
Now here is the silver lining. As soon I heard he was admitted to Hospital, my spirits lifted before temporarily crashing again when I recognized the severity of his illness. This is, strangely, what I had been hoping for. You see, with all the work we had done to get Vernon his Medi Care status, it turned out not to be enough. He was given Part B status, which is helpful. But Part A is where the good physical therapy benefits kick in. The only way he would get this is to be admitted into a hospital for four days. Its a crazy maze, the US medical system, but this was clearly a corner that would have to be turned if we were to get him what he needed for his recovery. But how to get there? You can’t just put someone in the hospital for 3 nights for a lark. It has to be something very serious. So you see…this is a huge prayer answered. Something I could not have done on my own by any means.
Its complicated, obviously. We don’t like seeing Vernon like this at all. Its quite scary and sad to see a loved one so helpless and ill. I know there is a lot of love and a lot of prayer being poured into him and that, mixed with great medical care, will have him healed soon. But: “Everything that you are going through is preparing you for what you asked for.” I don’t know how to say it better.
After the visit, we all went to Balboa Island, across the street. Little stretch of heaven on a winter’s day. Dave took this photo of Justine catching a new perspective. Hope is always there…you just have to look a little further out sometimes.
Bit of a rough one for Vernon today. He has yet another infection and is in isolation in his room.
He was the least responsive that he has been in 4 or 5 months, slumped in his chair, not tracking, not making a sound. He could only squeeze his hands tight and move his legs in slight agitation.
On the bright side, s0me great friends were visiting. Dave, his font-design colleague from Google and Crafting Type, has come out for a couple of days from New York. Jen made a visit as well, bringing a classic world cup football game on her laptop for Vernon’s entertainment. We all made the most of it, chatting dover pre-birthday cupcakes, but it wasn’t much of a party. Maybe he’ll feel better tomorrow when his real birthday rolls in.
I’d like to think that though he wasn’t able to communicate, Vernon did know we were with him, that he wasn’t alone on a rough day. And he’s always been a very good listener.
Maki and I are getting used to these ups and downs. It’s no fun to see him this way, but we know now that its temporary. I worry about him most in these moments, wondering if he finds this sort of thing stressful, but he manages well.
He’s resilient, that kid. His dad is too. We look forward to his spring-back. May it be soon.
Rhythm and harmony find their way into the secret places of the soul.” Plato
Because of my interest in music as therapy, many people have been recommending the documentary Alive Inside, which shows nursing home patients, who have lost their memories and identities and often physical control, have these things returned to them in various degrees when they are reintroduced to the songs of their youth. I finally sat down to watch it and was deeply moved. For me, it validated something I knew to be true, that music reaches beyond medical ability. Soul medicine. We have been bringing music to Vernon since the beginning of his recovery journey and will continue to do so. Here is the link to the film trailer. Be prepared to be deeply moved.
So inspired was I, that I mentioned the film several times to nurses throughout the day, hoping they would say, “Oh yes, we do music therapy here too!” I am not sure yet if they get any musicians in this new place, but we’ll find a way to make it happen. I did see stacks of records in the activity hall. Vernon’s parents are coming out in a couple of weeks and they will be bringing records from Vernon’s teenager years that are still stored in their loft. I imagine handling and looking at those albums again would bring back extra memories beyond the connection of the songs. I was thinking of this today, and realized I hadn’t played music that he might have known from his earlier youth. Music that his parents played. He used to mention they listened to a lot of Glen Campbell, the Carpenters, John Denver. In fact, so warm were his old memories that before moving to the States a few years ago, Vernon would often talk about his ideal road trip across America. He’d cross the country making stops at such glamorous places as Wichita, Galveston, Pheonix, San Jose—all those wonderful places he’d learned about as a boy listening to this parent’s records.
After listening to this classic, he grew very peaceful. I asked him what it made him think of. His parent’s living room, he said. He also said it brought a good feeling.
All this thinking of memory-music today gave me another idea.
As adults, most of us don’t really make mix-tapes anymore: to put a mix together with hand-picked songs (and meanings) often to give to a friend. Vernon’s birthday is Monday, February 2nd. I haven’t known what to get him that will mean much, but then I realized we could come together to make him a ‘mix-tape’ playlist.. If you are a reader who has known Vernon, please send me the name of ONE song (either as a comment or via email) that you think he would like, or perhaps that defines a memory in your friendship. I’m sure we will end up with quite a hodge-bodge, but that is the beauty of it. Maki can help me put it together. It would be great to have it made by this Monday. Only one song each, please. Thanks so much for helping me make something special for him. He’ll love it.
On Monday, we said goodbye to our friends at Newport Subacute, promising to come back for the occasional visit. Here is Vernon and his main nursing crew, Joseph and Ivy. I’ll miss them too, they are wonderfully caring people.
I drove over to the new place, Mesa Verde (also in the Newport/Costa Mesa area) to make sure he actually had a room waiting. Its been such a long process, trying to get him moved, that even though I had signed him out at one place, I wouldn’t feel secure until I knew he was tucked into bed at the other.
This is what I found waiting for him. I took the thoughtful welcome note as a good sign. They may as well have put a chocolate on the pillow and champagne on the nightstand.
Due to his dialysis schedule and my own parenting schedule, I couldn’t be around for his arrival, but I made sure to get up there the next day with Justine after her pre-school let out. She was pleased to be greeted by three lovely ladies in the courtyard.
Aloha!
We missed the morning therapy assessments, but I was able to meet with the speech and physical therapists later. It is such a relief to know that this time, with Medicare in place, Vernon’s work can start immediately. I had an especially good sense about the speech therapist, who already had come up with some unusual plans to get Vernon’s swallowing stronger so that he will be able to drink liquids without coughing and begin to eat more normal textures of foods, ultimately weaning off g-tube feeding. She seemed to have a progressive approach to memory work as well. The person I spoke to about physical therapy also told me some of her ideas, especially pushing to get him up with a walker. Much of our conversation was about the hours that insurance will allow. I was prepared for this, but it seems we still have a long way to go before he gets the amount of therapy that I believe he needs. In the medical world, everything comes down to hours and pay, even if the staff is wanting to do more. So please continue to pray for favor of the doctors and the therapists. I hope that someone important sees his potential is beyond the numbers on the paper.
An optometrist recently visited Vernon and supplied him with a new pair of spectacles. I think this is pretty funny as he used to talk about wanting a pair of classic NHS issue spectacles. It’s the American version of a wish come true! One eye far-sighted, and one near-sighted? Let’s add that anomaly to the list of things that can occur from a blow to the head.
Justine liked that she could hang out in the new hospital bed with daddy.
I liked that too.
I haven’t met Vernon’s new roommate yet, but I could hear his voice from behind the partition and he sounded relatively young. That marks a big difference to this place already.
Actually, that is what struck me most. Mesa Verde is a lot more lively than the previous facilities. Of course most of the patients are in wheelchairs, but some are standing, and some can hang out unsupervised. I was struck by a few patients that were definitely younger than Vernon. This is an encouraging change, what we had wanted for him. But I will admit that I felt quite sad looking at him as begins his transition to a new place (never completely smooth.) Before I could say, “He’s so much younger than the others, surely he deserves a better environment.” Now, he will have to struggle to catch up to the level of his peers. Looking at him in bed yesterday, without much energy or interest in moving, forgetting my name yet again, I felt like the parent who has pushed for her son to skip a grade because he is too smart for that level, only to realize in his new class, he is at the bottom of the learning curve and no longer the sharpest kid on the block. In comparison to the other younger patients here, I can see he has a long way before he catches up. And though that will make this a better environment for him in the long run, its honestly a little heartbreaking to recognize anew how far he has to climb.
Here is one more thing.that caught Justine’s photographic eye:
If that’s not a face that says: “WELCOME!” I don’t know what is.
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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