Some Difficulties in Reaching the End of a Chapter

            The good news is that Brooke is now scheduled for discharge to home on Sunday morning, the 17^th—just short of two years after his accident.  It’s the end of a chapter.  Over the past few weeks and more, the two of us have been putting together a rather extraordinary team of caregivers, including those with nursing experience, respiratory, and other backgrounds, even drywalling—but all either already trained or being trained with Brooke.  Some of these folks we’ve already known, and thought they’d be good; some have responded to ads we’ve placed in various places.  Brooke does his own interviewing, with his usual unerring instincts about the qualities people have, and it’s a really great team we’re putting together, even if it includes a lot folks who might seem to be amateurs.  It’s on the spot training, and there’s been a lot of it going on. 

            But there aren’t any straight lines in anybody’s therapeutic experience.  There was a rather sobering swerve today that we wanted to tell you about, because it features some rather heroic activity on the part of various people.  As Brooke was being hoyered into his wheelchair to go down to physical therapy, the alarm signal activated on his diaphragmatic pacer.  The alarm stopped briefly, then it alarmed again, and before long, the pacer showed all four Xs on its readout, one for each of the electrodes implanted in his diaphragm, for “connection failure.”  It beeped incessantly.

 

This is a nightmare scenario for anyone like Brooke who is dependent on a mechanical device in order to breathe—though many other patients are still more fully dependent than Brooke.  Fortunately the aides and others who were on the spot when the pacer failed responded very quickly to this emergent situation, and Brooke could breathe on his own without the pacer for some minutes, even though he was somewhat panicked, as anyone would be.  One of the aides used an oxygen bag to pump air into his lungs; others tried to figure out what the problem was; then with the alarm still beeping constantly—a rather unpleasant sound under the circumstances—the head respiratory therapist came down immediately to try to troubleshoot the situation.  He tried every tactic he could:  disconnecting and reconnecting the leads, changing the batteries, etc., but Brooke was eventually put back on the ventilator. 

 

The doctor arrived somewhat later and immediately went to work, examining the wires that go into Brooke’s chest and down to his diaphragm.  He’d already contacted the manufacturer of the pacer, right on the ball, and so had a hunch about what might be the case:  it was the fifth wire, the anode that connects the circuit that, they thought, might need re-crimping.  But what was impressive was the care with which the doctor examined the wires, and the precision with which the manufacturer treated the situation—it requested photographs of the leads, of the connectors, even of the battery pack showing the XXXX reading—and indeed the concern exhibited by everybody involved.   

            This, coincidentally, was the day the state inspectors were visiting South Davis.  They’d already left by the time this happened, but we wish they could have seen this.  They’d have been impressed—it is after all just what they should be looking for, but don’t always find, in health care facilities.

            As we said, there aren’t any straight lines in medical narratives—there are always unexpected bumps and swerves.  This is sometimes extremely difficult to live with, Brooke says, though we both know that we’ll have to live with such things for the foreseeable future.   Health care is full of uncertainties; that’s the name of the game.  If there’s anything we’ve learned over the past nearly two years, it’s to expect the unexpected, often the unpleasantly unexpected, like infections, like wounds that don’t heal, like pneumonia, like pain.   But Brooke had been in brilliant form for the past couple of days too, his trach capped almost all day and on room air, not to mention the intellectual sharpness and good humour he has sometimes lacked—that period of brilliance had been unexpected too, but great.  Indeed, his next class on Walden  is already prepared in this head,  and the thing that worried him most during today’s swerve was whether he’d be able to teach. 

            He will.  He’s absolutely committed to it.  And it’s a real swerve, upward.