Brooke’s been at South Davis for more than three months now. South Davis specializes in vent weaning, among other things, and he’s been the beneficiary of long, sustained, one might even say loving attention. When he came here at the beginning of March he could initiate breaths and manage to be off the vent (with just a little oxygen supplement and warmed and humidified air) for what seemed like a huge amount of time: five minutes. It seemed like forever, he says. Now he can do an hour easily, or an hour and a half, or more, twice a day.
When he came here, he was also having lots of trouble with pain and spasms, especially huge, enveloping spasms that gripped him, sometimes gripped his whole body. The worst, he said, were the ones that felt like a vise gripping his chest, and they interfered with practically everything: eating, breathing exercises, talking, everything. They’ve improved too, presumably with the drugs he’s been taking, especially something called baclofen: a little magic pill, 30 mg. four times a day—including in the middle of the night. Of course they’re not really magic, and they can only do so much: the spasms persist to some degree, though they’re not nearly as difficult as earlier. Things are obviously going in the right direction.
But they’re going slowly. That’s to be expected, especially as time goes on; but there are ways of assisting them: high-tech ways like pumps and pacers.
Thus Brooke may become even more of a Bionic Man. First, he’ll go to the University hospital this Wednesday to test for a baclofen pump: the oral baclofen is discontinued for the day, and, via a lumbar puncture, he gets a test dose of intrathecal baclofen. If that’s effective, he’ll get the pump itself: it dwells under the skin of the abdomen, with a tiny tube that runs around to the back of the spine, then through the spinal column into the intrathecal space itself, where it mainlines baclofen right to the spinal cord without the need for oral dosing. That would allow lower doses, fewer side effects, and a sense of high-tech status.
Next he’ll also be tested for a diaphragmatic stimulator, or pacer. This newly improved device works in a simple way: two electrodes are attached some distance apart on the underside of each half of the diaphragm (did you know there were two? We certainly didn’t), and an electric pulse is sent from the battery pack to make them fire. When they do, the diaphragms contract, and this pulls air into the lungs—this is the way we ordinarily breathe, sucking air into a vacuum created as the diaphragms contract, not having air pushed into our lungs, the way a mechanical ventilator operates. Of course, the diaphragm pacer too requires testing: first, a test to see if the phrenic nerve is intact, and the second a test to see if firing the electrodes makes the diaphragms behave. The good news is that this version of the diaphragmatic pacer doesn’t require a big open-chest surgery, just four little laparoscopic slits, and the leads come out through these holes and attach to the battery pack. Then you get to wear the battery pack on a belt around your waist, and if you didn’t feel high-tech enough already, you get to admire this, added to the cardiac pacemaker you already have, the intrathecal indwelling backlofen pump, and now this, the diaphragm pacer. Bionic Man, yes indeed—but it’s all in the interests of breathing better and staying (relatively) free of spasm. Nice, huh?,
There’s other progress as well, though still glacially slow: with his left hand he can touch the thumb to his forefinger, middle finger, and the rest, and can—amazing exercise—squeeze toothpaste out of a tube. He’s starting to work with a hand-operated joystick on his wheelchair, though driving a big and heavy a piece of machinery, especially one that often seems to have a mind of its own, is still a challenge. There’s some movement in his right hand; some in his right toes, and a whisper in his left toes, the furthest behind. But he has a fair amount of force in each leg, and that’s a wonder to all. If you come to visit, especially if there are two of you, you can (under his instruction) pick up his legs and make bicycle movements—that’s where you get a real sense of forward, forward progress, even if it is so torturingly slow.