I took this picture of Vernon on Friday morning. He was out of his bed and it took three CNA’s to get him back in. It wasn’t the first time, wouldn’t be the last. They shook their heads at me with the same look in their eyes: it’s going to be a trying month ahead. The wound nurse came in to check his hip. Vernon didn’t want him touching him, didn’t think anything was wrong there. The nurse said, “This is going to be a hard situation.” I told him I preferred the word “challenging.”
I’ve been very worried about him the past few days. The state of the world and some heavy/tragic news from a few different friends have put my head in a spin. If I’m not careful, I carry around my feelings about all of it and I think Vernon picks up on my negative vibes. It doesn’t help either of us. I sniffled through my workout Saturday morning before seeing my mom and crying on her shoulder. “I wanted this surgery so much, and now that we are on the other side of it, I’m so worried about him. What if he can’t keep the cast on? What if it gets infected? What if he loses his arm?”
My wonderful mother prayed with me and gently said: “You thought the worst was going to happen before—and it didn’t. How you feel now doesn’t mean you know the future.”
I kept thinking of that throughout the weekend. I don’t know the future. I’d listen to more of the upsetting news around the world and instead of getting angry like I have been the past month or so, I’d remind myself with this pinch of salt: I don’t know the future. I’d think about my dear friend with aggressive cancer, and say a prayer for her because I don’t know the future. I don’t know the future of life with Vernon. I don’t know the future of his arm. I don’t know the future of the kids. It may all turn out better than I can imagine right now. I don’t know either way.
Funny that one can find either fear or peace in that, depending on how one thinks. At the moment, I’m slightly more peaceful. Control is overrated anyway, right? But still, it’s worth asking for a sign. A sign that something will get better. I just want to know I’m on the right path.
Vernon’s new doctor, Dr. Hong, left me a message Sunday morning. He’d checked up on Vernon and thought he was doing well. He also told me he was best reached by text message—which works well for me! Here is our interchange:
I think it was the sign I needed…that I can communicate with Vernon’s new doctor with emojis.
I’m writing from Vernon’s room at Hoag Hospital Irvine. Thankfully, he was admitted last night after the surgery to repair his broken left radial bone. Originally the plan was to send him home a few hours afterward, but after requesting that he stay, the surgeon obliged and the return ambulance order was cancelled.
All went well with the surgery, which entailed removal of 4cm of bone from his hip, then grafted into his left radius and clamped tight with a heavier-than-before internal brace. I was most impressed with Dr. Leiber and his team. Even the anesthesiologist seemed more thorough that usual, having researched Vernon’s history and asking questions about various medications I hadn’t even realized were listed in there. I knew he was in good hands. I was in good hands too: my friend Susan Logie drove out from Whittier to keep me company in the waiting room. She told me: “I’ve left dinner for the family, they are on their own today. I’ll be here as long as you need me.” After the surgery, it was her suggestion that he should stay overnight. It didn’t take long for the people in charge to agree. He was still coming out of his sedation by the time I left at 7:30, so I think it would have been difficult for him to return to his little bed at Mesa Verde without intensive nursing care.
He’ll be returning tonight, but in the meantime, I’m taking advantage of the hospital situation, hoping to switch some things around. I met the doctor assigned to him last night and found out that he follows some patients at Mesa Verde. Today, I suggested to his daytime colleague that I’d be interested in switching to his care if its a possibility. After all, I have yet to meet Vernon’s current doctor face to face, though he’s been with him for over six months… and though he is very nice on the phone, I believe he may be over-loaded.)
Thankfully, Vernon will be receiving dialysis today at the hospital, which will be easier on him than sitting in that hard dialysis chair would be, especially with his sore hip. But he will have to go back soon. I took the opportunity to tell the delightful doctor assigned to his care this morning that I hadn’t been happy with our nephrologist and some of the issues over at Davita, but I didn’t know how to research other options, not knowing how other facilities would be able to deal with Vernon’s complicated case. She introduced me to a nephrologist on the floor, whom I met for a consultation later in the afternoon.
Together, we arranged a plan for Vernon to start going to a place that is actually closer to his care home…and instead of five mornings a week, we can start at three (2.5 hours each time). She will be his nephrologist and I am already more comfortable with her, and believe she understands Vernon’s situation and my desires. Connection is so important when it comes to this kind of thing.
Now, I’m home and it’s evening. I won’t go on much longer about all the things that happened today. But I would be amiss for not sharing that Susan drove back with two of her kids and a friend (who wants to be a nurse) to keep Vernon company in his room for a bit. Remember, the Logies live an hour away and yet, they find time to serve Vernon (and me!) with their musical gifts and Big Love. I find that so inspiring — I want to be more like them.
Here are Belle and John singing Fleet Foxes. So lovely. Of course Vernon loves music the most. It’s the best medicine.
Vernon will be transported back to Mesa Verde tonight. In fact, he may be on his way right now. I’ve told the charge nurse at Mesa Verde that I’d like them to check on him twice as often through the night to make sure he isn’t attempting to unwrap his arm. The surgeon double taped it at my request, but even today, Vernon was trying to release his arm, much like a trapped animal. He just can’t understand why it’s there. And if we explain and talk him down, he can forget ten minutes later. The pain meds probably don’t help with his cognizance, but they can distract him temporarily. So I also told the care home that even though I prefer to go light on Vernon’s drugs, in this case, I’ll allow them to push the pain killers for a few nights.
We’ll see how it goes. It’s going to be a challenge, letting that arm heal. It’s supposed to take a month for the bone to heal and the main threat of infection should be gone in two weeks. I am believing that we had some breakthroughs in his medical care today. His future is changing a little, hopefully for the best. But I ask for even more prayers on his recovery. I think this is going to be a very tricky time, keeping that arm bandaged. But at least, the surgery is DONE! Hallelujah for THAT!
The game is changing….lets hope it goes forward for awhile, rather than in circles.
PS Not to be forgotten in all of this, this very morning I spoke on the phone to the new lawyer taking our case since our previous lawyer recently left the firm. The guard is changing all over the board today.
“Change is the law of life. And those who look only to the past or present are certain to miss the future.” John F. Kennedy
Vernon’s normal ambulance was waiting outside the Dialysis center when i arrived this morning. I could see he was still inside it so I knew it would be a late start. But when I walked up to the open back doors, the EMT still sitting inside with an oxygen-masked Vernon, I was told that his blood pressure was very low and that they’d already called 911.
I’m ashamed of my initial reaction, which was: “Really? You sure? Is that really an emergency? He had low blood pressure earlier this week and they cannula-ed him with oxygen. It was fine. Anyway, can’t you take him? The response of the fire department and their ambulance will cost me at least $400!” (I’ve learned this a few times before, you see…)
I guess it come down to a matter of logistics and whether his scheduled ambulance drivers are picking up on a doctor’s orders or not. In this case, for some reason (though they’ve dropped him at the ER twice before on their own call, I remember) it had to be the city. And though Vernon’s blood pressure had gone up from 78/52 to 110/62 by the time he was checked in the new ambulance. A fireman asked me: “Want him to stay for dialysis or shall they take him?” I didn’t know…I told him I’d prefer dialysis of course, but I’d need another opinion. So we marched inside and requested the third opinion from a nurse, Thomas. When he got checked him, he got 90/60, and decided it was too low and erratic for dialysis today. I couldn’t argue then.
So he was taken to the ER at Hoag Newport. And after having a chest x-ray and some blood tested, he was declared clear and healthy.
After watching Vernon smacking his dry mouth for a couple of hours, I asked: “Could this in anyway be due to dehydration? I know he’s given water, but I never see it happening. I don’t think he gets enough.” The doctor ordered fluids, but by then I had to leave. I was informed he was sent back home this afternoon.
Vernon has to be screened and treated for his history of MRSA before he is able to go into surgery next week. The doctor had hoped things would be speedier, but by the time that was cleared, he started his Independence weekend holiday. So Vernon is booked for surgery one day earlier than originally planned—Wednesday, July 6th. I am really looking forward to that, as his arm seems to have gotten worse…and though it doesn’t seem to bother him, it makes me nervous.
A couple of months ago, we began the long process of Vernon’s naturalization. According the The UCIS website, “naturalization is the process by which U.S. citizenship is granted to a foreign citizen or national after he or she fulfills the requirements established by Congress in the Immigration and Nationality Act.” So basically…if all goes well, he’ll become an American citizen.
It may seem strange embarking on a citizenship path when he is so disabled, and we don’t even know if he will make it through the ten months it usually takes to get one’s application passed. But in a funny way, this is giving him a reason to keep going…whether he remembers it or not. We’ve talked about it enough that he seems to want this in the moments we can connect. Some of the things I’ve written down are: “I want to be an American so I can be with you, Alli. I don’t want anyone taking me away from you. I want to be an American because this country gives (jobs) and also because my daughter is American.” Ok, he may be confused as to the rights he already has or where we are in the scope of our relationship, but it is almost always tied up with a positive message. And so we’ve moved forward, even if its a complicated process and a complicated starting point.
Only once in our conversations, has he expressed a fear of losing his British citizenship, but the cool thing is that both countries allow duality (not that I expect him to ever return there.) Whenever I bring up the subject of naturalization, his responses are consistent. It is something he wants to do. It turns out also that one of my sister Cambria’s best friends is an immigration attorney in San Diego. She has been a great help in immediately responding to the tens of questions I’ve sent her. When Vernon and I decided to move to the US, it took a good ten months of processing paperwork and many visits to the consulate in London just to allow Maki and Vernon to move here, so I know how daunting the process can be. In fact, I had to go through a similar process for my Spouse Visa when we first married, and later, when I tested in for an Indefinite Leave to Remain. (If we had stayed longer, I might have opted for citizenship eventually.) Needless to say, immigration paperwork is something I have a history of working through. But every time, it is completely unique…with a different set of rules and hoops to jump through.
One thing that his struck me through the research process is that Vernon is absolutely eligible to be a US citizen despite his disability. The biggest obstacle, obviously, IS his disability. I was happy to learn that there is a medical waiver form for his doctor to sign, which allows him to forgo the written exam and swearing in ceremony. I believe that someone will be sent to him for his biometric interview once this application is reviewed, which will make things much easier for us.
I started filling out the forms about two months ago, but last Thursday (ironically the day of the EU Referendum) Vernon signed his signature on the finished packet. He knew what he was signing. This is something he wants to do.
Though I’d asked Vernon’s doctor several weeks ago to fill out Vernon’s medical waiver, he hasn’t got it back to me. So the other day, I called our beloved Dr Dan, whose number I still have tucked away for emergencies. Within two days, Dr. Kruse had it finished. They are still the best doctors we’ve ever had…even when they aren’t officially working for us, they still deliver! I picked that up today, so pending our attorney friend’s looking over all the paperwork I’ve scanned and emailed to her, we should be ready to send these forms off at last.
“As stated earlier, loss of executive function—loss of attentional control, working memory, cognitive flexibility, reasoning, problem solving and planning.”
Now, Vernon has to hold on for at least another ten months. It’s good to have a project and a plan…especially a big one!
On a semi-related note, here are old passports belonging to Vernon, Maki, and Justine. Relics from another time, if you look closely. As of last week, they will cease to become European Union citizens. But I still think of them as citizens of the world.
I can’t say enough good things about the Logie family who comes so often to play for Vernon. It’s been about a year since we met them, and they have truly ministered to Vernon and the rest of the family. I am blown away how those kids are with each other and others in the world. They all appreciate the value of serving others: the homeless, the elderly, the sick and disabled. They have been a family of angels to us, and I am so grateful and honored that they drive so far so often just to give Vernon some musical peace. We have known since even deep in his coma, that he resonates with live music, and today reminded me of this again.
When Justine and I arrived at Mesa Verde this afternoon, Vernon was sleeping. Perhaps I was too quick to wake him up and get him outside because he suddenly became terribly impatient waiting for a CNA to move him to his geri-chair. He can have strong mood swings and lash out in anger—as we know, it’s a typical symptom of TBI. But today, it was difficult to shake him out of it. I don’t know if his arm is bothering him or what causes these things. When I asked him, he told me he didn’t know, it just comes over him and then he can’t help it. It’s especially difficult when I have Justine with me and he starts yelling and swearing. But this is nothing new, its just that he couldn’t shake it today.
However…when the Logie family arrived and started playing music under the shade of the big umbrella, he was able to finally relax and enjoy. He wasn’t very talkative, he seemed especially tired, but he was no longer strung up in his anger and impatience. It was like two different personalities, instead of just sides of his personality. So, do I believe in the healing power of music? Absolutely…it’s proving itself yet again.
At one point, were joined by a couple of other ladies who requested Amazing Grace. The more, the merrier indeed! (I don’t have a video of my own, so this one is one from Susan’s phone.)
A few of the other locals who benefited from the music. For some reason, most of the mobile patients prefer to stay inside and play Bingo every Sunday when there is a free concert out on the patio. But there are always a few stragglers who get to enjoy it!
I came across this entry, posted two years ago yesterday. Vernon’s eyes were finally open after a month of coma, but it would be another couple of months before he could really get his eyes to track. He would come up and down from the surface, like a whale (I believe I wrote about that analogy as well.) I had no idea how far we would have to go still. Little steps forward, little steps back. Coming up for the view before submerging again.
Here is another entry, nearly two months later, that I felt must finally be the real thing. He was finally waking up! Or wait, was it two months later than that, when the lights came on.
I wrote all the above this morning, while collecting thoughts and dates, going through old blog posts to find specific information on Vernon’s residential history (more on that another time.) I’d been thinking about how when things are good, they seem great, like real breakthroughs. But when things shift backward, it’s harder to remember how to be hopeful that day. The past week, Vernon has been slumping, in my opinion…both with those people who watch him and check in with their observations and my own experience with him. He’s been okay lately: not highly agitated, but also not very communicative, not as present as he has been in the past month.
There have been whole sessions of dialysis where he doesn’t want to chat at all. Even with me, he has opted to listen to music on headphones and quietly chill out for much of the session. He’s rediscovered Beach House, a band that he initially turned me on to years ago. Who can resist relaxing to that dream-pop goodness? The nurses report him sleeping more than usual…this makes me nervous, of course, just because its not the norm I want.
So I didn’t expect much today. But he was great, maybe better than I’d seen him yet. There are layers of recovery…you don’t get the best of everything all at once. You do get good parts though—and if there were a graph, it would have shown him leaping forward today. The graph in my mind lit up when he spoke of missing his father, whom he has been speaking of more and more. His eyes were clear and his communication was connected. A nurse asked him about his arm and he said it was an old wound from when he’d broken it years ago and that they would be fixing it soon. He couldn’t remember where he had first broken it, but the recent information was correct.
At his request, I read him one of his old letters to me. He lit up, and when I suggested that his younger self was reaching out by letter to his current, older self, he understood.
“What do you think of this younger you, Vernon?” I asked.
“I feel like that person. I felt like him then and I feel like him now. I really, really like him. I would like to walk up to him, shake his hand, hug him. (After a pause…) He needed someone to hug him and that person would have been me. That would have meant so much to him.”
Well, who needs a therapist, right? Isn’t this the whole point? To speak love into your younger self? Superpowers are being witnessed.
Vernon also managed a Skype phone-call with his sister, Vanessa. There wasn’t a lot of time, but this was good day to nab his attention. I overheard a little on how they would each vote on the British Referendum tomorrow. He retained enough (that either we had discussed together or he had heard on the TV news in his room) to claim the opposing view to hers. He would prefer that England would stay in Europe, as he had mostly always known things to be. I could only hear one side of the conversation, but I imagine she was relieved to hear that politically, he remains true to his Labor-leaning heart. Shades of the old Vernon are still prevalent. He still votes with his heart, even if he’s not in his home country anymore. I find that endearing. (That said, he is not able to officially cast a vote.)
(Note to future Allison: If in a year from now, you do an update post of the high points, I hope you include this post. This was a good day.)
“Life can only be understood backwards; but it must be lived forwards.”
― Søren Kierkegaard
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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