The Dream of a Donation
Superheroes

One year ago, Vernon was moved to Newport Subacute. There had been many attempts to get him into more desirable facilities, but in the end, this is what he got. As Justine learned in Preschool: “You get what you get, and you don’t throw a fit!”  I didn’t throw a fit, but I spent the next three months trying to find a better place for him on my own. I still believe it was there that he lost his chance to one day walk. His right knee is permanently bent and both achilles are calcified. But now these things are the least of his problems. We did manage to find a new home for him at Mesa Verde, which we are very happy with…even though he used up his physical therapy benefits by summertime.  If it weren’t for Mesa Verde, we would never have met Joe, a king among men, worth more than a thousand working limbs.

It was a year ago, then, that Vernon began outpatient dialysis at Davita, another place I have struggled to work with. We were only going three days a week then, and Vernon was still safe in his chair and didn’t need sitters.  The facility is big on seasonal decorations, and I recognize the autumn leaf motif returning to their walls and ceilings a year later.

Though I’m recalling the past, I’m not here to complain. In fact, this reflection brings to light something positive for me. A year ago, I didn’t know enough to say “NO” to anything. I had my preferences, but I felt like we just got pulled into the tide of medical decision-making that often had little to do with our best interest. This still happens, of course, and I have gotten used to hearing “NO” over and over as we ask for more things that I think might help Vernon’s recovery or comfort. That’s the “system” we have in in this country.  If you aren’t filthy rich, it takes a lot of creativity and stamina to get what you want in health care.

But something new happened this week: I was the one saying “NO.”  It was a simple interaction, but it felt as if  I had turned some sort of personal corner.  I have to power to say “NO” even in the medical world.

I got a call on Saturday from Fountain Valley Medical Center, informing me that on Monday (yesterday), Vernon would be having a surgery on his left arm to fix the fistula that had been embedded in April. April!  How can this be an emergency then? Basically the doctors at the dialysis center talk to each other but not to Vernon’s overseeing doctor or anyone at the Care Home. So even though Vernon has had to have two emergency surgeries in the past month, and though it took him almost a week to recover from the anesthesia from the most recent one (which was very scary), they were happy to put him under yet again to suit their calendar.

I interrupted the woman who was asking me the pre-op questions over the phone. “Can I put this on hold and get back to you after I call my doctor?”

I called Dan. “Is it life-threatening if Vernon doesn’t have this procedure right now?” He hadn’t heard anything about it, but he assured me it wasn’t.

“I just don’t think he can handle another bout of anesthesia so soon. I can’t handle it. We finally got him back for a few days after a scary drop in consciousness. I say “NO, not yet.” Can I do that?”

Dan assured me that I could.  And he agreed that this would likely be hard on Vernon’s body and mind, so soon after the other surgeries.

I cancelled the appointment. And I have yet to hear anything from anyone in the nephrology/vascular/dialysis camps. So I guess it wasn’t an emergency, after all.

I do feel angry about this, how that camp sees him as some sort of machine to fix and tweak, not ever looking at the bigger picture. But I won’t throw a fit. I can just say “NO.”

I like the feel of that. It’s our turn to use the word…Lord knows I’ve heard it enough in this journey.

(That said, whenever I do our own thing…I have a niggling fear that I’m killing him. But at least we’ve got him in a good space for the time being. We can book it after Thanksgiving, instead.

On that note, I booked a wheelchair van for Thanksgiving Day. I had originally thought we’d aim for Christmas, but the last year has taught me that you must take advantage of the windows while you have the chance. If all goes well, he and Joe will be home with us for a few hours on Thursday, the 26th.

How is that for a big fat “YES?” It’s about time.

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(Vernon, a few years ago. Just found this picture hiding in the archives. Who needs legs or kidneys when you’ve got a face like that?)

 

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The Dream of a Donation
Superheroes