Working Up to the Pacer

            Today, after several delays, we went to the University Hospital—where Brooke’s long year of hospitalization began—for the initial workup leading up to the implantation of a diaphragmatic pacer.  This device involves two pairs of little electrodes stitched to the underside of the diaphragm, powered by an external battery pack; it’s programmed to make the diaphragm contract and thus strengthen it so that Brooke can breathe more reliably on his own, at least during the day and maybe even 24/7.  You’ve heard about this device many months ago; now there’s about to be action. 

 

            The day began with the transport from South Davis: it was 14 degrees outside, so Brooke was hulled in mittens, a hat, a neckscarf wrapped rakishly around his throat so that only the tip of the trach was visible, and three layers of the warmed blankets that the hospital makes available.  Inside the van, the 2009 versions of classic Christmas carols blared from the radio, sung by a modern-day Bing Crosby, but the trip was actually a fairly easy one. Once at Rehab, Brooke said he felt some nostalgia—he’d spent almost three months as a patient in that unit, and many of the people he’d been close to there were still on the floor, still working hard, but they all remembered him.

             In the consultation room, we met the principals who will be involved in the pacer:  the surgeon, who will be trained by the specialist from the Cleveland Clinic;  the pulmonologist, whom we knew from earlier times and who’d introduced CoughAssist into Rehab; our wonderful spinal-cord doctor.  This will be the first time this pacer is used in Utah, and Brooke will be one of the first four patients to have it.  Needless to say, among the people involved in the pacer, indispensably, was the research associate, bringing the long, complex informed consent document. 

            Brooke wanted all of the informed consent form read to him, especially the section on risks.  Implanting the device could puncture the diaphragm; it could lead to bleeding; the external leads could break; etc. etc.   But the risk is lower for Brooke in several ways: because he has worked so hard on breathing over the past three-quarters of a year and can now breathe off the vent for as long as seven hours in a day, he’s a very good candidate for this procedure.  If something goes wrong, he can still breathe; if it goes right, which everyone expects, it will take advantage of the strength he has already developed in his diaphragm and, it is believed, make it possible to get off the vent much, much sooner.  The best guess at the moment is that the surgery will happen sometime in mid-January.

            Of course, there are still many steps after the thing is implanted.  There are conditioning sessions, when he’s off the vent and lets the pacer do the work.  He’ll need to use a Passey-Muir valve while eating, drinking, and speaking, the three most important activities of all.  And there are still stages of trach-size reduction and secretion control and so on—just the same, this will be we hope a big step forward.

            “I’m excited,” Brooke said, at the end of the morning.  In fact, practically everybody had said it in one way or another during these meetings.