Note to Laurie

Dear Laurie Whoever-you-are,

Thanks so much for your comment to the “Wounds” blog entry yesterday. [To see Laurie's comment, just click on the little tiny phrase '2 comments' (or however many there are) at the very end of the blog entry.] We have no idea of who you are—no last name, no e-mail address, no phone--so this is the only way to contact you. Brooke and I have been talking about your comment—I’ve just read it to him over the phone, since I’m at home and he’s in his room at South Davis—and we’re composing this note on the phone to you.

He’s doing most of the talking:

Thank you so, so much for the information about the accident and your wonderful thoughts. Even now, more than a year later, I’m still trying to reconstruct in my head how the accident actually happened, and your comment helps enormously. We would love to talk to you on the phone or meet you in person if that’s possible, just to understand what happened more fully and because you’ve said so many touching things about both of us. If it wouldn’t be too much trouble for you or too disturbing, could you give Peggy a call (801-824-9160) or e-mail her (battin@utah.edu). Peggy has tried to find the location of the accident—something about tire marks on the asphalt—but still doesn’t know exactly where it occurred. And if you happen to know the other runner you mention—we didn’t know there was anybody who actually saw the accident happen--we’d love to meet her too. The same goes for anybody else who might see this on the blog who was around on the scene at the time.

Laurie, your comment is quite moving. There are a few things to note—one is about the other rider. Someone else has also said that the other rider was rather arrogant, but at that point all he could have known was that his carbon-fiber bike had been broken in half while Brooke’s bike was intact. He couldn’t have known how serious Brooke’s injuries were. Later, after the flight nurse came along, someone told me, he said he wished he could share half Brooke’s injuries, an impossible generosity that would surely erase any earlier hint of arrogance.

Your comment also points to some strange things about the way we do health care under HIPAA: for example, that the hospital would tell you no one had identified Brooke but later, after I’d learned about the accident and come in to the emergency room, they wouldn’t give you any information because you weren’t a relative. This is of course a strenuous interpretation of what HIPAA requires; the more appropriate interpretation, it seems to me, would be to ask the patient or, since he wasn’t in a position to be asked, his surrogate (me), whether we’d want to release information about him, including perhaps his identity and his condition, to you or other non-relatives (we would have been happy to do so, if we had just been asked). I always find the assumption in the way HIPAA is interpreted that patients want total privacy rather than release of information to relevant (and not just related) others problematic.

Back to your account of the accident. Yes, Brooke says, he did have San Francisco 49er gloves. Red. They were new, and I never saw them.

It might seem strange to be so interested in what actually happened at the accident, now 14 months ago, since it can’t change anything about the outcome, but somehow understanding it—just as an accident, nothing more--is part of learning to live with it. We’re both grateful to you, and Brooke is especially so, for writing. Thanks.

Of Wounds and their Consequences

            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.

 

 

 

 

 

Facebook Fears

This is a tiny, general note of apology for not replying to Facebook, LinkedIn, or any any other invitations many of you have sent me from the new networking sites: I’ve realized that at the moment I can’t imagine even another minute added to the demands of our current life, and am recognizing that I just can’t join these sites. I’d be an addict, I know—I’d be looking at your postings all the time, and I’d get easily hooked. After all, I’d love to know what you’re doing, planning, thinking, but right at the moment I just can’t risk finding out.

By all means send me (or Brooke, at my e-address address) e-mails or notes or cards or letters or whatever, but please accept my apologies for a desperate effort at time-preservation. Those of you who’ve already succumbed to these temptations will surely understand.

(Of course, there’s no telling when I’ll weaken. And Brooke may be happy to join when he gets e-hooked up, though he still doesn’t have e-mail and the voice recognition software is on hold at the moment. So keep making invitations, but just don’t be surprised if it's a good long time before we respond.)

Peggy (& Brooke)

The Speaking Valve

            After the fever subsided, life has returned to normal, or rather, its new normal—routine days in the hospital, working on breathing, physical therapy, socializing with friends, and letting the wounds keep healing.   Of course, it’s not entirely normal or even the new normal, since the three bags of antibiotics are still hanging from the IV pole and we’re still on general alert.  But things are much better, and the wounds are indeed healing. 

            The new thing is the speaking valve.  Of course, Brooke has been working on the speaking valve for maybe six months, maybe even longer, but it’s only recently that he’s been beginning to take off with it.   When he started, it began with the same sensations that trach mask began with—panic, anxiety—but he has gradually worked up from five minutes, then ten minutes, then twenty minutes—now he’s at forty-five.   The speaking valve—we’ve described it a bit earlier on—is a small purple plastic cap device that fits over the opening at the end of the trach.  It’s got a membrane that’s a one-way valve—it lets air in through the trach, but not out through the trach.  Instead, on the out-breath, you have to push the air out through your mouth or nose. 

You begin by making simple sounds, Brooke says like aaaaaaah,  ohhhhhhhhhhh, ummmmmmm.  These sounds were very indistinct at first—I could count to five, maybe, but that’s all.    I’m working with a speech therapist who gives constant reinforcement—it’s very easy for your mind to get in the way and you say things like  I can’t do it  and I hate this and when I get off this valve I won’t be able to continue with the trach mask trial, and indeed sometimes you can’t keep going at all.   But you do keep going, breathing in and then holding your breath for two or three seconds, and then breathing out for three or four seconds, until every last bit of CO2 is exhaled.  You suck your breath back in through your nose, breathe out through your mouth, then back in through your nose.  The anxiety that you feel is held very tightly in the shoulders and the neck, which need to relax as much as possible—this is more difficult than it sounds.  Imagine an opera singer who must work with his or her diaphragm to produce extraordinary sounds, often at great length—this takes an amazingly strong diaphragm and great control, both physical and psychological.  You have to relax the whole upper body.  There’s an analogy to what is going on in this process—imagine if you’re giving a speech or teaching a class, the same applies: if you’re tense your voice sounds constricted, unnatural; if you’re relaxed, your voice comes out with natural intonations.  But for me this process as it goes on is constantly being interrupted by voices, almost literally voices inside one’s brain, like cries for help, don’t do this to me, don’t put me through this.    

When Peggy happened to come in, this is what she saw: a man in the throes of anxiety, trying to do aaaaaaah, ohhhhhhhhhh, ummmmmm, but it was obviously really hard.  Then the speech therapist asked Brooke to think of the calmest, most peaceful scenes—for instance, he recalls, the time when we swam in Lake Florence, up under Lake Blanche, up in the mountains above Salt Lake; it was autumn and the water was almost warm.  We floated separately and together, and the whole forest around us was reflected in the perfect stillness of the lake.   Then we got up on the bank and lay on the grass with nothing on but the sun on our skin, one of the most delicious moments of my life, says Brooke, and mine too adds Peggy.  The speech therapist asked Brooke to feel the sun again and the sensations of the water.   Thinking of things like this are classic meditation and calming techniques, but what is not classic is that you’re breathing off the ventilator using a diaphragm that has atrophied, but is now beginning to regain strength.   This is what the speech therapist has been trying to accomplish, calming and relaxing so that speech becomes more and more natural off the vent, and she has been doing it wonderfully well.   The aaaaaaaaaah, ohhhhhhhh, ummmmm are indeed exhausting, but then Brooke and Peggy tried doing them together, Brooke eventually holding the sounds almost as long as Peggy could, a matter of great progress.    And they morphed into Om, Ah, Hung, the sacred syllables taught by the lama and posted on the wall so that we could chant ommmmmm, ahhhhhhhhh,  huuuuuuuuuuuung together. 

The speech therapist left us alone together when she had to go on to another assignment—that reawakened the panic, even though Peggy was in the room with Brooke, but repeating ommmmmm, ahhhhhhhhh,  huuuuuuuuuuuung succeeded in restoring calm.  Brooke finally finished the session after an hour and forty-five minutes, a new record, a full hour longer than the previous speaking-valve time.  It’s one more step not only in strengthening the diaphragm but towards normal breathing and speaking function, something the rest of us all take for granted but for Brooke has to be entirely relearned.

In the meantime, however, he uses his vent-voice most effectively: when Peggy arrived this morning she found him teaching English to one of his favorite Spanish-speaking aides, one who gives him the most gentle and understanding care.  The aide’s English is already pretty good, but Brooke was pronouncing exquisitely carefully for him all the various difficult English words in a talk he was preparing to give. Here, Brooke’s vent-voice was virtually perfect and the aide’s English genuinely enhanced, and it was a moment of genuine exchange between two people mutually caring for each other even if in different ways. 

Just a quick update on Brooke - the wide-spectrum antibiotics worked their magic and the fever is gone. He resumed many of his daily routines today, include his trach trial and the tilt table. He even feels good enough to enjoy a dinner party tonight. We can breathe a sigh of relief that whatever went through him in the past few days is gone.

Fever

            It happened just like the last time, with familiar signs: exhaustion, increased spasm, an overwhelming desire to sleep.  These were, Brooke says, signs that he should have picked up on from the last time he had a urinary tract infection.  This time they started manifesting themselves on Friday afternoon.  He was drawing with his left hand some plant forms that a friend had brought, an artist friend who has a special method of teaching drawing by simply looking at the forms in front of you but not paying any attention to what you are actually producing on the paper: look at your subject, but not at your result.  After a few of these exercises, Brooke was completely exhausted, and then later he could not finish his stationary bike session; he lasted just seven minutes, when he normally does twenty.  In addition, his spasms began to increase markedly; sometimes when his upper body was being lowered in the bed to a supine position he would spasm so hard that his back would arch violently, and it took a minute or more to calm down. All these symptoms began to increase on Saturday morning, so that he could only do an hour of trach mask in the morning and a half an hour in the afternoon—a far cry from the total of seven hours he’d reached some weeks earlier.  He was so exhausted by the late afternoon that everyone was aware that something was going on.

            The fever began around then.  The nursing staff stepped up the frequency with which they monitored vitals, and that made it possible to watch the fever spike up:  37.8, 38.9, 39.9--that's 104 Fahrenheit, a fever you wouldn’t want to see in anybody, adult or child.  He grew warmer and warmer--no, hotter and hotter, until he felt as if he were burning up, but at the same time his hands and especially his feet were ice cold.   For quadriplegics, a slight rise in body temperature is interpreted as a catastrophic rise; the connections between the brain and the rest of the body beneath the lesion level have been disrupted, and thermal regulation is disturbed; there is no way for people with Brooke’s level of injury to regulate their temperature in any accurate way.  This is a condition one simply has to live with, though it may improve somewhat over time.

  The hospital staff was right on top of the spike in temperature and adroit treatment, including ice packs, brought the fever down.  This drop was accompanied by the classic sweating when a fever “breaks”—sweating on his arms and hands, where quads aren’t supposed to be able to sweat below the level of their injury, another symptom of the incomplete nature of that injury.  By late at night things were stable again, and three large bags of antibiotics were hanging one after another from the IV pole by his bed.

            This stuff is scary.   We were aided through this ordeal by a boyhood friend of Brooke’s who was visiting from Maine.  Brooke says it was really good to have somebody else there to alleviate some of the loneliness and isolation of this situation, especially someone who doesn’t panic or exacerbate the fear which goes with something like this.  As his fever was spiking, Brooke had confessed that he was afraid, and he’d asked to call a family member who has a medical background;  later he said he hadn’t thought he’d get through the night.  He asked one of the very trusted medics whether he’d make it; and this medic was reassuring in a calmly persuasive way—this when Brooke was burning up and his teeth were chattering, and he felt, he said, worse than he ever had so far.  The night was punctuated with nurses bringing IVs and pills and cold packs, and  one of the nurses had attempted to administer some of the medications, but he was so tired that he couldn’t respond to her repeated calls of his name in different intonations; afterwards she said that she had hardly ever seen somebody so tired.  She kept saying Brooke, Brooke, BROOKE, in different ways, and he’d respond but go to sleep again in about five seconds.  But things had begun to subside, and by morning—a clear, beautiful morning—things were clearly better.  The fever was gone, even if exhaustion was left in its wake.   He was grateful for the friend from Maine’s reading the op-ed pieces from the Times in the morning, even if barely able to digest them, but by evening was back to pretty much his normal self. 

            What’s the bottom line here? Unpredictability.  The suddenness of real threats. Brooke says, as bad as things can be, they can get worse sometimes.  What’s important about being in a hospital, both positively and negatively—hospitals are full of bugs, as is well known, but as also skilled in treating them.  But infections are a continuous risk, especially for someone in Brooke’s current situation, with many routes for infection: an open wound, a Foley catheter, a ventilator, a PICC line, all easy routes for invasion of an already vulnerable body.  We can’t take anything for granted, we know, and treasure (almost) every minute of continuing existence.  But these sobering thoughts are in the background at the moment, as we lie together in his extra-wide hospital bed, in the dusk of early evening, composing these notes to you.

The New Year: Memory and the Present

            It’s the third of January 2010, and time to take stock of where we’ve been and where we are.  (This of this as a version of the annual Christmas letters everybody writes.)  Last New Year’s, just six weeks after the accident, Brooke was at the University Hospital,  in the acute inpatient rehab facility, still subject to the continuing lung problems he’d had from the beginning—pneumonia, lung collapse, and tremendous difficulty in clearing secretions.  But it was a lively place, where he played Bob Marley whenever he was getting moved into the wheelchair or the shower chair, and some of the nurses and aides danced.  That was the holiday season: there were hundred of cards all over the walls of his room, and he would entertain the aides and nurses by asking how many duplicates they could find—and nobody ever found them all at once.   Believe it or not, Brooke says, that was a fairly happy time, despite the lung problems and the fact of total paralysis.  We had just begun this blog, or rather just begun to move beyond simple factual information, so the blog is just over a year old now in recording experiences and meditating on the meaning of them.

            So here we are, January 3rd, 2010.  The good news is that we are pretty sure that the diaphragmatic pacer implantation will take place in February, though we don’t know how long he’ll be at South Davis after that, completing the vent weaning—we’re guessing a month or two, but of  course most of our predictions about time have turned out to be wrong—remember when we thought Brooke would be going home in March of last year?  

The not-so-good news is that Brooke has been on bedrest again, following an earlier month of it for the surgical wound after his abcess, this time ever since Christmas. Being in bed constantly and of course in the same room constantly has practically driven him crazy.  Indeed, this morning he was talking about hospital-induced psychosis—but today was a beautiful day, almost mild for January 3, and so we took seriously what the doctor had said a couple of days ago:  that although his orders were written for bedrest and his best professional advice was to stay in bed until the wound was 100% healed, that the patient always has the right to mobility.  He added that there are plenty of patients in this facility who ignore doctors’ orders for bedrest.  We interpreted that as an ambiguous message, leaving a loophole in this instance; and considering the preservation of sanity even more important than rapid healing of a wound (which is almost completely healed in any case), Brooke got into the wheelchair this beautiful Sunday afternoon for an hour. 

He motored straight outdoors, driving the wheelchair with his head array—down the hall, into the elevator, out the double doors and into the brilliant sunlight of a midwinter day.  He could see the snow on the foothills of the mountains behind Bountiful, where the South Davis hospital is perched high enough to afford a view of the both the mountains and the Great Salt Lake; he could feel a crisp wind, but since he’d been wrapped in warmed blankets he didn’t feel the chill.  What an adventure, playing hookey, even if it only lasted fifteen minutes or so. 

So is this as happy a time as the one we were just describing in University rehab, a year ago?  Playing hookey is happy fun.  But what about then?  It’s amazing how you forget the really bad things, Brooke says—I had a lot of nights in the previous rehab unit that were fairly scary, a lot of close calls, a lot of pain, but what I remember is the lighthearted playfulness of many of the nurses and young aides even though they were serious and competent about their jobs.   What I experience here at this skilled nursing facility has a lot of bleak moments, periods of depression, and although the staff is generally kind and competent, there are some who have very little experience at all and so make turnings and transfers difficult.  Sometimes I’m extremely frustrated, and sometimes I dwell on the bad moments, and sometimes it’s so bad that I end up dissociating entirely.  If there’s one thing I’ve learned about the mind over the past fourteen months, it’s the way it has ways of detaching itself from extreme situations and of selectively remembering the good ones.

 

So what will I remember about this experience after it’s over?  About the University rehab, I really do remember primarily the happy moments, the warmth, the camraderie, friendship, even love from the hospital staff back then, as well as of course from friends and family.  While there are many nurses, aides, and respiratory therapists on the staff here at South Davis with whom I also have a sense of deeper bond, my memories aren’t as filtered—the hard stuff here is still really present. It goes on every day, and in my worst moments I fear the really hard stuff will never stop.  You’d think being turned from one side to the other would be an easy matter, but because it presses down your chest and compromises breathing, it can be very hard.  Or eating: tonight, for instance,  in the middle of an otherwise touching goodbye visit from a close friend who will be out of town for six months, just as her husband was feeding me some simple food—I forget what—I choked, aspirated.  This is simple enough to correct for anybody with normal coughing powers, but for me it’s a challenge, a kind of little respiratory cliffhanger.   But, I expect, I won’t remember it in the long run; it’ll be replaced by some of the truly wonderful moments that also occur here: the gentle way I’m sometimes turned, the way some nurses stroke my head or my hair, the way some turn and then fluff my pillow without even being asked, because they know me and know what makes me feel comfortable.  There are hundreds of these little kindnesses here; it’s these I’ll remember.   Amazing the way the mind filters out the really bad stuff; I don’t know how anyone could endure something like this if they actually remembered what has been going on all along, or didn’t remember the good things that punctuate the bad.