Wednesday, April 1, 2009

Birthday and Breathing

Brooke came to the long-term skilled nursing facility at South Davis for vent weaning—that’s the immediate goal here, and this is a facility that specializes in vent weaning. He’s been here almost exactly a month now. But vent weaning has been a long, rocky road, the last weekend in particular. There had been some promising developments earlier on—at one point, he had managed 53 minutes off the vent, but that had seesawed down to 20 minutes, then up again but down to10, then down to 5. It was about then that the Tinker-Bell call for the Virtual Birthday Party went out—help keep that light brightly alive. Send cards, e-mails, scribbled notes, I’d urged, anything. The vent-weaning stuff had gotten pretty discouraging, despite all the positive messages the respiratory staff kept sending—but the numbers weren’t there. Brooke said he was confused by the various strategies—go for long times, go for deep breaths and high volumes, etc.—and finally after some consultation a uniform program was put together. Train the way you do for a marathon: don’t start out by trying to run all 26 miles as once, but work up to it in short pieces. But it was still hard, and still discouraging, to still be on the vent after four long months.

The new program has involved doing 15, then 20, then 25 minute sessions off the vent, twice a day, just with a mask over the trach opening to supply humidified, warmed air (this is what the nasal passages normally do, but it doesn’t happen if your air comes in through a hole in your throat), with a little extra oxygen. Even these relatively short sessions have been very, very arduous.

But this morning, he says, was qualitatively different from all the other mornings. From the beginning, he says (and now I’m taking dictation from him), he knew he was feeling a new strength, partly because he could visualize his diaphragm for the first time (thanks to a quick anatomy lesson from Mike during a brief visit here) and what inhalation and exhalation were actually doing, how they were affecting the diaphragm. At a certain point, about midway through the 30 minutes, he began to feel that his breathing was not only stronger, but that every breath had become a joy, and that he had suddenly realized that the pleasure of breathing was something that was an end in itself, and that he needed nothing else. For the first time in his life, he says, he experienced what he had always been looking for in Buddhist meditation, but had never actually found: the full life of breath. By the time the 30 minutes were over, he says, he had attained a serenity beyond anything he ever expected to experience in his life.

If you want confirmation of this, ask Pat Zwick—who saw it on Brooke’s face when Pat arrived, shortly after Brooke woke up from his nap following the morning session of trach trials. Pat told me about it on the phone: he said he’d never seen an expression like it.

By this evening, Brooke and I have been enjoying a lavish Chinese dinner, take-out, a present from an old student of his who now lives in Washington DC, and a bottle of beer (Brooke’s first, another symptom of return to the world). But breathing is another matter again: now it’s the work of the vent, and life returns to hospital-normal. We’re still reading the hundred cards that came in to celebrate the virtual birthday—wonderful, absolutely wonderful—and it tempting to think that the Tinker Bell phenomenon has actually played a role.

There are still many more steps in vent-weaning to go. Brooke has been initiating his own breaths for quite some time and has been meeting the first goal: CPAP (continuous positive airway pressure) all through the day, though back on pressure support at night. The trick now is to strengthen the diaphragm. But there will be many many more trach mask trials, until he can do trach mask all day long, with CPAP at night. Then comes trach mask 24/7 for 10 days, and they take the vent out of the room (though, of course, this is a hospital, and it’ll be just down the hall). Somewhere in there comes a speaking valve, and full-time cuff deflation (when incidentally he can talk all the time), then a cap on the trach, then still more steps involving secretion control, and then the whole thing is done. This will take weeks and weeks, maybe months. And there still aren’t any guarantees. But it is looking better now, and easier (thank god) for him—it has been a very difficult business.

Brooke has done a lot of meditation over the years, meditation that focuses on breathing, but the experience of this morning was something that he never expected to attain. And in a hospital, at that, mostly paralyzed, with a respiratory therapist watching numbers on a monitor and bells going off everywhere. Maybe that’s the point—experiences like this come when you least expect them and in settings that would seem as unconducive as one could imagine. They’re something at which you can’t aim and which you can’t plan, but astonishing, ecstatic, when they happen.

6 comments:

Dana said...

Wow!!!

Nada mas. We're cheering for you.

Great strides.

Happy Birthday. Keep fighting.

norm said...

Who among us even think about breathing? Like most automatic body functions it's just something one does. (Except, I assume, for those who do
meditation).

This posting, Peggy, letting us share just a little in Brooke's struggle to breath, directs us to a different perspective on this small rythmic act of taking in and letting out.

Nan and I think about you two a lot. The confidence and spirit you both have, along with the pain, comes through in these remarkable narratives, and it inspires us all.
Thank you for sharing with us.

We will be back in Salt Lake in 5 weeks and very much look forward to seeing both of you.

Nan and Norm.

Steve Adams said...

Peggy,

I just thought I'd try to write another note after writing one yesterday (Wednesday, April 1). I have found that if I write you within a few days of re-signing onto the blog, all goes swimmingly. But, after a week or so, I have to start all over again (the blog no longer recognizes me). Maybe that is partly why Brooke's friends have problems logging on.

I have been on 'travelocity' trying to book a ticket, but have not committed. There are so many choices! Will let you know my final plans.

Love to you and Brooke,

Steve (Adams)

Patrick Zwick said...

On Wednesday when I arrived at South Davis, Brooke's eyes were closed. No one was in the room. I didn't know if he was asleep but thought I would be quiet until he opened them. I noticed that his face looked very clear and relaxed. His lips seemed to smile. Sometimes his skin has looked ruddy and his eyes encased in red or black circles. I can tell without being told that he has been traversing difficult times. None of that today. There was a feeling of total peace that I didn't want to disturb by speaking. I turned away and was quietly looking through the ever growing collection of recorded books and CDs on the armoire that holds the TV. "Hello, Pat", said Brooke. I turned around and looked into his eyes that radiated a joy of amazing intensity. "I took a breath this morning. A real breath." He went on to describe what sounded like a state of Satori or Nirvanna. Arriving at a place of such peace and joy. So simple, so profound. Lunch arrived and as Brooke ate, we spoke of Thomas Paine and told each other of our lives. Peggy called to have us bring up the Mandarin menu (http://www.mandarinutah.com/index.html) and pick some items for that evening's feast - Mary and I almost came back to share it with them last night, it looked so good. The day moved on but I will never forget it.
Patrick

Brenda Cowley said...

The lesson in breathing...While reading this post, I worked on my own breathing -- something that does not and never has come easily for me.

To be "taught" how to breathe from Brooke, is an amazing thing. Thank you, both of you, for continuing to "teach" while dealing with your current circumstances.

I am going to take a risk now - my heart is heavy with this...I know that most people who visit the blog read the comments (I do, at any rate) and so what I would consider private, will be public -- except that I might not be alone in what I am about to reveal. (Probably am, but it's worth the risk.)

Brooke's comments (in his own words) about visitors/friends -- people not coming back...his honest feelings on the subject...(this is tough to write, please bear with me, you two) --

I have not visited. I have checked the blog daily since you started it, think about the two of you -- hope for you, believe in you --DAILY.

But I have not made the visit. About a month ago, I was talking to a friend about this. I told her, "I cannot go, fall apart and end up making THEM comfort ME. I will not do it. If I go into that room, I will be the strong person that they need right now. And I am not that person right now."

I had an opportunity to go with Michael for haircut day, but KNEW the staff would take one look at me, whisper "influenza," and shoo me out the door. That day, I DID feel strong enough in my heart, but my body was sick. Too sick to visit someone in your condition.

It is easy to feel that I am "in contact" with both of you with this blog. (On my end. Not yours. I see that now.)

Nutshell: Brooke, I don't want you mad at me that I have not come in. I have not come because I am a "messy" person, (which you both have known for a long time) and am afraid that I'll ruin the day.

I wonder if some others feel the same, Brooke - nobody writing you off AT ALL!!!!!!! But afraid that in the end, we're not as strong as YOU.

I "visit" you daily. If there is not a new posting, I re-read an old one, or look at the new comments. It makes me feel close to both of you, but I realized after your entry, that it does not necessarily make you feel close to ME.

Admitting this publicly is no easy task. But I want both of you to know how MUCH I am "with you." My "action" has been to "watchguard" the blog. Be present, be with you -- but I realize now that's not enough, and you need more.

For now, I am going to continue with my chosen "action." Be with you daily -- both of you.

And I will get "strong" enough to face you head on. You may berate me in person.

I love you both -- even though I have not walked through that door.

From my heart,
Brenda Cowley

Lorraine Seal said...

Brooke

I’ve been thinking about your breakthrough in breathing and marvelling on how much of what is difficult for us lightens when we are able to turn the concept into image. It also reminds me of how you are able to move your foot when you look at it.

It's like a lesson in meditation, isn't it. It seems that being able to visualise the process and then relax, let go and stay in the moment, allowed you to finally find that place that made a deep, strong and clear breath possible. What a release it must feel. It reminds me as I struggle with difficulties to stay in the moment and breathe.

I still with you, still pulling for you. Thank you for continuing to work hard to live fully.

Lorraine