Let me explain.
Two weeks ago, on a Monday morning, I was washing dishes at the kitchen sink. Jeff's caregiver was back in the bedroom tending to Jeff. I heard her footsteps come down the hall and she greeted me in the kitchen.
"Kristen?" she said in her sweet, quiet voice. I turned around to face her. "Did you know Jeff has a ... bruise ... on his left heel?" She knew her words would startle me, so she said them in the most delicate manner possible. Bless her.
We hurried down the hall, and I knelt down to look at the bottom of Jeff's heel.
There it was ... a purple bruise the size of my thumb print just under the surface of the skin.
From Jeff's vantage point, all he could see was two faces staring intensely at the bruise. I knew he could tell I was both worried and bewildered. I probably should have tried to conceal my concern a little better, but there was no use pretending.
He peppered us with questions. "What does it look like? How big is it? What color is it?"
We described it in detail, took pictures of it, and tried to figure out where it came from. We checked his orthopedic boots he wears at night to see if perhaps a spider had gotten in there and bit him. Nothing.
As we discussed the possible causes of the bruise, I could hear the voice in the back of my mind telling me what this bruise really was. A dreaded pressure sore.
My heart sank as my panic rose.
We've had experience with a pressure sore in the past, and it ended in surgery. Jeff developed a terrible pressure sore on his tailbone in the months following the accident. By the time doctors began aggressively treating it, the sore was so deep and infected, it wouldn't respond to treatment. I remember crying in the car when I would drive home from the hospital because I was scared to death of that pressure sore.
I am convinced that the pressure sore surgery saved his life. That sore was eating away at his body. He ended up having two inches of his tailbone removed because it was infected. If we had waited any longer, the infection could have spread throughout his body.
He had the surgery 3 months and 8 days after his injury. That's how quickly a pressure sore can get out of hand. And that's why I hate them so much.
In facing this new sore on the heel, we backtracked to try to determine how and when it happened. While Jeff watched football on Sunday, he settled into a comfy position in his chair with his feet extended out a little more than usual. He diligently did his pressure relief by tilting his chair back and forth to alleviate the red spots that tend to develop on his elbows and rear end. He always does a great job at his pressure relief. But the one thing he didn't do that day was change the position of his feet as they reclined higher than usual. He just figured they would be covered in the tilting pressure relief he usually does. I thought so too.
On Monday morning, I was kicking myself for not doing a better job.
We're still dumbfounded at how one small change in his routine - reclining his feet an inch higher than usual - can have such dire consequences. Plus, his right heel is perfectly fine. There's no pressure sore there. So it's likely his left hip was slightly forward causing his left foot to protrude just millimeters beyond the right foot. Both feet were pressed against the footplates. But the slight differences, simply put, made all the difference.
And so we're dealing with a new pressure sore. As long as we keep all pressure off it, we're hoping it will heal in time.
Jeff won't be able to wear regular shoes for a while - probably months. He is wagering that the mark left by this sore will still be on his foot this time next year. I think he's right.
Looking back on our journey, we have so many things in this new life that are determined by the smallest of margins.
Some days Jeff is totally comfortable in his chair. Other days, he is miserable. And most of the time it's because something is just slightly off. His shoulders need to be rotated, or one knee needs to be pulled forward.
I remember when Jeff was in rehab, one of the therapists was showing me how to adjust Jeff in the chair. He told me to rotate his hips. I looked at the therapist like he was crazy. I said, "I don't think I'm strong enough to move him like that." He said, "You don't need much strength. The slightest movement can have a big effect." He was right.
Sometimes my mind takes me all the way back to the day of Jeff's accident. I often wonder how different our lives would be if Jeff's injury was just one vertebrae lower. Jeff is a C4, and in very general terms (because no two SCIs are alike) his injury means he cannot breathe without a ventilator, and he has no movement below the tops of his shoulders. If he were a C5, not only would he would be able to breathe on his own, he would be able to move his arms.
Needless to say, those differences would be life changing.
But it doesn't do to dwell on the if onlys. We have to concentrate on the here and now and deal with the latest set of challenges.
And so we keep going. Taking this giant journey one small step at a time.
Photo courtesy of Evie