Coming Home, Part I

            The proposal to the insurance company for Brooke’s diaphragmatic pacer has been cleared by the insurance company’s medical panel, the doctor stopped by today to tell us, and while this isn’t the final approval, it’s looking good.  It’s time to plan for coming home, the doctor says, time to start working with the social workers, finalizing plans, learning treatment routines, and more.

            Of course, we don’t know when the surgeon will come out from the Cleveland Clinic to do the pacer implantation, or how effective the pacer will be, or how long after the implantation it’ll be necessary to stay in this facility, with its skilled nursing care.  All we know is that the doctor spoke really directly of coming home for the first time, intimating that it could happen soon.

            Brooke saw a look on Peggy’s face that was almost like panic:  think of the stuff that still has to be done. How will I finish the preparations? How will I get the house in usable order?  And how will I ever keep all the sticky notes under control?—they keep springing up everywhere, as if they had lives of their own.  And Peggy saw Brooke’s distress, something in between fear of dependency, concern for the look on Peggy’s face, and feelings of utter helplessness in a place where he can’t do or control anything.  We both realized that a sea change is finally on the horizon, wherever that horizon is at this point; it is certainly somewhere closer than we had been imagining.  We’ve been looking forward to homecoming so long, and yet when the reality starts to present itself with all its numerous logistical and emotional complexities, we suddenly feel overwhelmed.   How will we manage?  How will we find enough people to attend to Brooke’s needs, beyond those who are around now?  How will we complete the house modifications in time, so there’s no dust or loud hammering or noise?  Where will we store all the supplies?  How will we get our friends trained enough so that they can spend time with him alone, without the support of a whole hospital staff in the background, just in case there’s any trouble?  We find our minds swirling with thoughts of the difficulties homecoming will present.

We’ve been looking forward to this homecoming for all this stretch of time, but when it hits, Brooke says, it hits like a bombshell.  Peggy’s been more or less alone in the house for all this time—except, of course, when there’ve been visitors in town; what will this be like for her when it changes?  I’ve been in an environment with a huge staff; what will it be like for me when my caregivers narrow down to just a handful of familiar ones, however much I like them? We’ve been dreaming about having breakfast in the new breakfast nook, looking out the windows together from home, but the reality is not likely to be as easy as that.  It’ll mean waking up at 5am, having a suppository, bowel care, followed by the fairly elaborate process of getting up in the chair.  It’ll require at least one and usually two other people in the house during the day, and at night, for that matter.  It will involve a complete change of life patterns for both of us, in different ways.  I’ll be out of the hospital and away from this care, and Peggy will have to figure out how to keep her private space and how to keep up with her work; we’ll have to figure out a schedule.    We’ll have to have a very elaborate plan when Peggy’s away, especially at night.  We’ll have to have somebody trained in emergencies on call 24 hours a day.  We’ll have to have a CoughAssist machine, devices for suctioning, a tilt table, an extra hoyer; in fact, we’ll have to rearrange the whole back of our house for all the equipment that’s needed.

            It’s about dream and reality, and the negative and positive sides.   One of the negative sides has to do with space and intrusion—both intrusion into private space but also the way in which other people’s fears about intrusion, we’ve been told, may discourage them from coming. 

            The positive side has to do with developing a community of people who can help, both physically and, more important,  emotionally and intellectually.  We’ve always spent a lot of time away from home, mostly traveling all over the world, but home as we’ve said earlier will have a very new meaning now, and in a sense be much more than just a place to hang your hat in between trips.

 

            Dream and reality.  I’ve had a lot of dreams, says Brooke—dreaming about teaching the OSHER course, about going to the Hotchkiss reunion this June, dreams about home.  But not all these dreams are easy ones; there are night fears too.

 

            Most of these concerns, especially the negative ones, are about physical arrangements.  Yet when we try to imagine the emotional and intellectual aspects of moving home after more than a year in the hospital it gets even harder.  Will friends still come to visit with the wonderful loyalty they’ve been doing?  Will visitors from out of town still come, and still feel welcome, visitors like the one who wrote the remarkable comment to the previous blog entry, Brooke’s former student, the poet Mike White?  Will we find things to do together, reading, thinking, talking?  Does a visit in the hospital have some sort of special cachet that a visit at home wouldn’t have, or will it be the other way around?  How can we make this not just our home, but a sort of home-away-from-home for people who care about Brooke too?   Folks with experience in these matters tell us that homecoming is one of the hardest parts of this whole thing, and here we are, already starting to worry about it now.  This isn’t the first entry about anxieties about coming home, even if it’s titled that way, and it surely won’t be the last.

 

            Of course, if we were to remember the lama’s early lesson, it might help now.  Don’t think about the past and what you can’t do now.  Don’t worry about the future; it isn’t here yet.  Live in the present moment, and focus on what’s good about it.

 

            So here’s the present moment: We’re still in the facility which has kept Brooke as comfortable as possible, which has treated him with remarkable kindness and dignity, and which has provided an endless stream of nurses, aides, respiratory therapists, and of course custodial workers, almost all of whom Brooke enjoys and who enjoy him.  Right at the moment he’s busy trach-masking, listening to a new Julian Bream recording of baroque guitar, and clearly “in the zone.”  So why should we be worrying about coming home?  We’re here, now, and while in some ways we can hardly wait to get home, we have also to remember that this is home right now.

 

 

 

Arm-Skating

There haven’t been many updates about function, until tonight. The student OT was there working with Brooke, while some good friends were setting out various dishes for dinner; Peggy was at home, catching up on piles of work. The OT tried something new: an arm skate, just a little piece of wood with four small casters screwed to the bottom, set on the smooth surface of the tray table over the bed. The arm and hand rest on the top of the skate, and you try, try to move it back, forth, back. It takes triceps and biceps, muscles that for Brooke have been completely nonfunctional for the past 14 months, and which he’d been told he’d never have the use of. But this is a wonderful never-give-up OT, working on the left hand. Here’s what the dinner guests said in an e-mail they sent me after they got home:

…the time with Brooke was positively thrilling. The movement of his left arm was stupendous, amazing, wonderful, unbelievable--and a whole host of adjectives I can't summon up at 11:45.

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.