Months and months ago, somebody sent Brooke a card with Churchill’s famous phrase, “Never, never, never, never, never give up.” It hung on the wall in the previous rehab facility along with a lot of other cards, packed away (not discarded!) when Brooke was moved to South Davis, but it’s one we’ve just started thinking about again. It’s been a difficult time recently, but this morning we worked together on breathing—Brooke as the athlete-in-training, so to speak, and Peggy as the coach. Here’s how it went:
The respiratory therapist—a wonderful, gentle man with an amazingly kind face—comes into the room. Brooke’s in the bed. The aide has been called to make sure Brooke’s body is positioned comfortably in the bed, in preparation for the trach mask trials. L., let’s call the therapist, first uses the CoughAssist machine for three or four minutes to clear out any secretions; then he disconnects the tubes from the vent where they attach to the trach hole in Brooke’s throat, then puts a monitor connector over the hole, then on top of that a clear plastic mask, just three or four inches across and curved so it can’t occlude the hole, connected to another tube that blows warmed, humidified air across the opening to simulate the way air is normally warmed and humidified when you breathe it in through your nose. Brooke asks for music, slack-key guitar. The first few minutes of off-the-vent breathing are always a little difficult for Brooke, in switching from one form to another; L. hovers around the monitor, recording end-tidals, oxygen-saturation levels, volumes. After a while Brooke settles into it, more or less; it isn’t easy, and you can see him pursing his lips, moving his head up and down, breathing rapidly but not very deeply. He can keep this up for quite a while, although it takes real effort. This is good, but not good enough. The therapist says something about breathing more slowly, more deeply, but he’s seen Brooke’s breathing over the months, now—end tidals within the appropriate range for an hour or an hour and a half, volumes in the 100s or 200s—low, but better than they were. This is more of the same. Later, Peggy will realize that L. is disappointed but in an expertly concealed way—there’s still professional encouragement available to the patient and genuine kindness, but the therapist knows that while this is good, it isn’t very good, and it doesn’t seem to be going anywhere much. He would never have used the damning word plateau, but later you know that’s what he must have been thinking.
Still, L. sits patiently in the room with Brooke—not all therapists do so, so this companionship is welcome—charting the numbers from time to time, end-tidals steady, volumes in the 100s, 200s. Peggy’s not usually there for the trach mask trials but for a change she is, leafing through a sheaf of papers she’s working on. An hour passes, and, she will also later realize, she’s getting impatient, bored, and at the same time feels this gnawing disappointment. Not much is happening except that this poor guy in the bed is laboring on and on, working hard but with only okay results. We won’t hear it today, but we haven’t heard that magic word awesome for months.
L. is standing by the bed. Now Peggy is standing by the bed, too, the equally carefully concealed disappointment eating at her too but of course more so, this isn’t just another patient in a bed, this is Brooke. L. says something to Brooke about deeper breaths; pretty soon Peggy is saying the same things to Brooke, “Deeper, slower, deeeeep breaths, deeeeeeep breaths,” and before long these form cadences, as if you were coaching rowers or singers or wind-instrument players, and Brooke catches on—it’s still hard, but he pulls in the air more deeply, more regularly, with greater concentration and effort, end-tidals holding steady but the volumes gaining, now many in the 300’s, and we’re into the second hour. L. and Peggy coach sets of deep breaths, then a lull, then another set, deeper, slower, deeper. Try for a three-second-long inspiration, says L., clearly much more optimistic now, and while that’s hardly possible just yet Brooke tries, and gains, and by the time we’re halfway into the second hour he’s doing lots of 300s, even 400’s--400’s are normal, L. exults. The nurse comes in and caths Brooke right in the middle of this; where he once would have needed complete silence with no interruptions, this time it doesn’t make any difference, and we keep on doing sets. Once or twice I catch that look on his face of complete involvement in pushing one’s body hard, the way he looks when he works out on the rowing machine or is biking uphill, and I know that L. sees it too.
I’ve never heard L. use the word awesome and he doesn’t use it today, but I suspect that he’s thinking it, also expertly concealed.
That was two hours off the vent in the morning. Brooke and L. did another hour and a half in the afternoon, and only stopped because L. had to leave. Thanks, real thanks to whoever sent the Churchill card: never, never, never, never, never give up.