Brooke has not been in his wheelchair since well before Christmas, except for an hour at Christmastime and an hour stolen from the doctor’s orders since. Before that he spent an earlier three weeks out of the wheelchair after the operation for his abscess. As you can imagine, being confined to bed for this length of time—over two months—can drive one pretty crazy. You begin to lose track of time; you don’t know what day of the week it is; everything melts together. The first wound, you’ll recall, was created by surgical removal of an abscess at the base of the scrotum—a straight-line opening maybe four inches long and a couple of inches deep, which was to heal by secondary intention, that is, allowed to fill in from the inside instead of being stitched closed. It is now nearly healed, just half an inch long and only the depth of the head of a Q-tip. The other wound is smaller, shallower, the result of a tiny tear in the skin that came from pulling off tape from a dressing of the other wound. In any other site it would be completely uninteresting, just a superficial wound only one layer of skin deep, about the size of a 50¢ piece. It would be nothing, really, except that it’s right under the sitting-bone in the hip. That makes it a matter of considerable risk, since skin becomes so fragile in spinal cord injury.
As modern medicine goes, wounds like these seem extremely minor. They aren’t bleeding; they aren’t sending shooting stabs of pain anywhere; they aren’t life-threatening, except in the indirect way that anything in a hospital is. But they have consequences: for example, to keep the wounds from being exposed to urine, Brooke has had to have an indwelling catheter, a Foley, which has led to the urinary tract infection we described in the piece on fever. The antibiotics from treating the urinary tract infection lead to loose stool movements, which lead to more frequent dressings of the wounds and delays in healing; everything is tied up in a circle. Then there are the consequences of not being able to get up in the chair—you lose lung capacity, your shoulders get slumped, there’s increasing general debility, there’s the risk of having to postpone the long-awaited diaphragmatic pacer implantation surgery, and there’s also, last but not at all least, not being able to see the world, meet people, even go outside on a warmish winter day. What one misses from what now seems like a privilege, being able to be in a wheelchair, has a considerable human side: it’s an even greater confinement than what was already the case. It makes you crazy, says Brooke, but fortunately that’s true only some of the time.
The emergence of these wounds does raise issues, however. First, there’s the question about causation, responsibility, and blame. One of these wounds was made surgically, intentionally; the other began with just a tiny little accident, virtually unnoticed at the time, but ironically with far greater consequences for Brooke—it’s the latter that’s keeping him confined to bed. But there’s still the question of responsibility for the latter: is it the nurse or aide or whoever pulled the tape off the other wound? Or whoever didn’t notice the tear, or who noticed it but didn’t do anything about it? Or who did something about it—indeed, there was a wipe of antibiotic ointment at first and then a little gauze pad over it—but perhaps not the right thing? What would the right thing to do have been, anyway?—there seems to be no agreement about that. The doctor emphasizes the importance of keeping all pressure off this wound; would blame, then, go to the aides who continued to turn Brooke from side to side—as written in the orders and required every two hours to prevent bedsores—but didn’t think about not turning him fully onto the side where the new wound was brewing? What about the aides who weren’t even aware of the wound: who should have let them know? What about the family member who saw the wound more consistently than anybody else, but didn’t complain loudly enough? And what about the patient—was he not aggressive enough in his insistence that the wound be treated effectively and expeditiously, or in not recognizing that he ought not be turned onto the wound-bearing side?
Maybe blame isn’t appropriate; sometimes things just happen in hospitals (and elsewhere) that aren’t anybody in particular’s fault; perhaps they’re just a function of that uneven gulf between the development of careful systems—regular charting, standard procedures for handing off from one shift to the next, requirements for reporting lapses to various authorities—and the human variation in carrying out of orders and working within systems. For example, the less troublesome wound, the one healing by secondary intention, is to be packed twice daily—that’s to keep it open so it can heal from the inside. Some nurses use gauze packing; some use packing tape; some moisten the wound with normal saline or wet the packing with it, and some pack it dry. Fortunately, this wound doesn’t seem to care; it is healing nicely despite all this variation. The other wound, however, is fussier, even though it is a much more modest and superficial wound: whatever people try—wet dressings, dry dressings, open-to-the-air strategies, specialized contemporary dressings, barrier creams, etc.—nothing seems to have produced the kind of rapid healing one might hope for in such a seemingly minor wound. There’ve been discussions bordering on disagreement; some nurses favor one strategy and disapprove, though rarely openly, of strategies in use by others; some claim that there isn’t any right way of responding to wounds like this—“every patient is different”; “some patients heal faster than others”; etc. etc., and some don’t think it has much to do with dressings at all but with positioning, shear, and pressure on the wound. It is even said that sometimes the body seems to focus on one wound at a time, and the rapid progress being made by the other, surgical wound has its price in neglect of this one.
Then there was one more wrinkle—it came to light that a particular ointment, highly touted by some of the nursing staff, wasn’t available because, it was said, insurance wouldn’t pay for it. Of course, it was never made clear whether it was Medicaid that wouldn’t pay for it, or Medicare, or private insurance (which Brooke has)—just the vague, unsubstantiated claim that it couldn’t be had since, it was alleged, the stuff cost $60 a tube. Of course, no insurance company capable of using a calculator would have such a policy, if not covering such an ointment might risk complications that would keep a patient in the hospital another month or so, but, of course, we don’t know whether any of this is true. What we do know, though, is that it took only a very little protest, and a tube of the generic version of this magical ointment appeared the very next day.
There’ve been benefits, too, even of this two-month-long period of confinement to bed. Since Brooke can’t get up in the chair and hence can’t get to the physical-therapy gym, all the OT and PT work has had to go on in his room. So we’ve rigged up two little motorized cycles—little machines that have just a pair of pedals, that’s all, that go round and round—one for his legs, the other for arms. These are both quite good for providing exercise and for increasing strength, evident especially in the legs. Confinement to bed has also provided an excuse for really concentrating on breathing, and indeed not only has Brooke been spending up to six hours or more off the vent (on good days), but two hours or so on the speaking valve. As you know, we’ve been doing some long syllables together while Brooke is on the speaking valve, like chanting ommmmm, ahhhhhhh, hunggggggg and trying to hold these sounds as long as possible, but today we also did singing for the first time, with a couple of verses of Jamaica Farewell. Carrying a tune has never exactly been Brooke’s forte, but this was certainly sweet music, in his own real voice.