Tuesday, July 28, 2009

What Churchill said

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.


Lorraine Seal said...

I'll say it: Awesome.

Claudia Hackworth said...

Yes, awesome! I'm certain I am not the only friend who, reading this posting, is breeeeeeathing long and slow for you and sending good breathing karma your way. Keep it up, never give up. I'll be up to see you soon!

norm said...

If you take apart and twist around the word awesome, it becomes some degree of awe. This is what we all feel for both of you now.... some large degree of awe.

hang in there, see you in a few weeks.

Very best

Norm and Nan

Brenda Cowley said...

What Norm said -- and I'll add a "wow," for emphasis.

Wow, I am in awe.

Brenda Cowley

daisy said...

Hey Brookie... Gavin and I have thought about you a lot and are routing for you as you attack this breathing but we see it's definitely really hard work for you. We can see that in reading blog. Hope that you know we are far away but think of you a lot and often. xoxo Daisy and Gavin

ed ranney said...

Hi Brooke, and Peggy,

I am just catching up after these recent weeks away, and am deeply touched by the latest entries, your struggles, and Patrick's wonderful note. The description of the breathing work is astounding, and the recent progress, after so much difficulty, is simply amazing. I know it's difficult to keep an even keel, but those accomplishments are really encouraging. So just keep them in mind when the setbacks occur, and not much seems to be happening.

I'm so glad too you've had a full period of family visits - nothing more important. It's discouraging about the van situations, but surely there's a way around those limitations. Will just take time and ingenuity to work out.

My three weeks in Peru were much less productive than I'd hoped - HORRIBLE mist and overcast all up and down the coast, Lima truly unspeakable this winter, so photographic work was severely limited. I came home earlier than planned, especially as it gave me an opportunity to be with our youngest daughter Ellie before she weds on the 15th. Melanie returns tomorrow from New York state, where her family were commemorating her dad, who died this spring.

I'm thinking of you Brooke, anxious to visit, and so much appreciate the blogs, and news, and feeling in touch with all of you.

Love from all of us