Tuesday, December 30, 2008

Anger, and awakening

Just a day or so ago, a dear, much-admired friend wrote me an e-mail, a work of real honesty, hard to achieve in this difficult situation. She said, But it is you who my thoughts are for and why I find it difficult to write. Of course one does not know what one’s reactions will be when upsets happen, but I fear my reaction to all this would be rage. Anger at what can’t be reversed. Anger at feeling trapped. Anger at a dear spouse, however undeserved. And just plain old undirected anger, perhaps at helplessness and the tragedy of shattered hopes and plans.
She’s certainly right that one does not know what one’s reactions will be in situations like this, so I’m actually rather surprised to find that my own reaction seems to be entirely different. I can’t find the anger anywhere, just anguish when it seems to be so difficult for Brooke and when I see his whole big body stretched out motionless on the bed. It’s true that what’s happened can’t be reversed. And I suppose there’s a sense in which I’ll be trapped, though to tell the truth I’m sort of looking forward to a less frenetic, less globe-trotting, quieter home-based life. Anger at a dear spouse, however undeserved? I know this is an entirely natural reaction, but it is working just the other way—there’s room for oddly greater emotional intimacy at a deeper level than before, and I’m grateful for this, not angry, even if the reasons for it are so painful. And plain old undirected anger? I suppose one could be angry at the universe for being so unfair, but it doesn’t seem unfair, it just is, and since we’ve been so much luckier in life than so many people, it hardly seems unfair, except in that Brooke has to pay the whole price.

But even if I haven’t been reacting (yet?) in the same way that this wonderfully honest friend says she thinks she might, I think the range of reactions to Brooke’s situation must be hugely varied—anger, pity, horror, fear for oneself, grief, mute numbness, awe at the irreversibility of misfortune. What I keep remembering so vividly is that the image of Brooke’s quadriplegia hurts every one of you who cares about him, not just me, and I wish there were a way to sit with each of you to touch, to respect that wound.

But there is some good news today as well. The first is about food: we’ve finally taken him some pureed and mashed foods cooked by friends, not by the hospital—a butternut squash soup, a homemade paté, an Indonesian-flavored chicken soup, a bit of lasagne from Cucina, and more. All the swallowing problems seem to be evaporating: he is wolfing stuff down. So if you’re cooking something good that can be pureed or mashed, feel free to take a tiny little dish of it to him or leave it by our side door! No more hospital macaroni and cheese? Actually, there’s a medical reason to do this: it is claimed that success in weaning from the ventilator is associated with good nutrition, and it is clear that his nutritional status will be way better if he has food he really wants to eat.

The second bit of good news is about motion. At the end of The Winter’s Tale, what Leontes believes is a statue of his long-dead wife Hermione begins to awake, to come to life. Today, in a left arm that has been as motionless as a statute for a full six weeks, Brooke was able to move his thumb, arc his fingers ever so slightly, move his hand just slightly forward and then justly slightly backward on command. It is crucial not to race to conclusions about the whole statue awakening just like Hermione and we all know that Brooke will always have immense impairments, but just the same the sort of sense of amazement that Shakespeare conveys is there when you see his long-dead hand start ever so slightly to come to life. Here’s the passage; this is one of Brooke’s favorite passages in all of Shakespeare. That his own hand should “be stone no more” is something we can “look upon with marvel.”


Either forbear, 

Quit presently the chapel, or resolve you 

For more amazement. If you can behold it, 

I'll make the statue move indeed, descend 

And take you by the hand; but then you'll think-- 

Which I protest against--I am assisted 

By wicked powers. 


What you can make her do, 

I am content to look on: what to speak, 

I am content to hear; for 'tis as easy 

To make her speak as move. 


It is required 

You do awake your faith. Then all stand still; 

On: those that think it is unlawful business 

I am about, let them depart. 



No foot shall stir. 


Music, awake her; strike! 


'Tis time; descend; be stone no more; approach; 

Strike all that look upon with marvel. Come, 

I'll fill your grave up: stir, nay, come away, 

Bequeath to death your numbness, for from him 

Dear life redeems you. You perceive she stirs: 

HERMIONE comes down 

Start not; her actions shall be holy as 

You hear my spell is lawful: do not shun her 

Until you see her die again; for then 

You kill her double. Nay, present your hand: 

When she was young you woo'd her; now in age 

Is she become the suitor? 


O, she's warm! 

If this be magic, let it be an art 

Lawful as eating. 


Sunday, December 28, 2008

Up and down, jobs for all

Up and down, down and up

You know that if this were a real roller coaster, ups would follow the downs, and downs would only come after ups. This isn’t quite like that—sometimes there are lots of downs in a row, and in a rare confession yesterday, after a sustained bout of trach trouble, Brooke said, “sometimes this is really hard.” But he’s working on preserving the ups as well, especially the wonderful psychological up from all of you, by having the cards you all sent pasted up on the wall across from his hospital bed.
This is Isabelle’s job. She’s Brooke’s niece, here from New York for the holidays, along of course with her parents, Lisa, Brooke’s sister, and her husband Mark. This is a terrific job for Isabelle because although she’s only 14, she’s as tall as her 5’10” mother (height runs in the Hopkins family) and can tape cards as high as the ceiling. They’re plastered solid over half the wall already, and we’re still opening cards and letters, even some from right after the accident—by the time this work of art is finished, it will cover the entire wall, and remind Brooke continuously of what you’ve meant to him. Sometime I see him gazing at the card wall and imagine (or rather, I think I know) that he’s scrutinizing each one, thinking about the one of you who sent it.
Sara’s family is also here for the holidays—Sara, her husband Greg, and Max, 6, and Sydney, 4. It’s wonderful to see how everyone just sort of takes on jobs—for instance, Greg has already replaced the faucet in the kitchen sink with a much more elegant and functional one, and has been excavating the old front door that’s at the front of the house—something we’ll have to open and widen to let Brooke go in and out in his wheelchair. Sydney’s job is drawing endless pictures to take to Brooke and of course playing with her Mattel-manufactured, Barbie-line horse, Neigh-Neigh. Max goes to hardware stores with his dad and also brings down the huge icicles that form under the eaves of the house with single deft stroke of the shovel. He’s particularly interested in how Brooke’s ventilator works and all the numbers and diagrams of breathing in and out that flash across the monitor display. And Sara still puts her hand on Brooke’s forehead and tells him, more effectively than anyone else, “relax, relax.”
Meanwhile back to Mark and Lisa: Mark is doing a phenomenal job of researching durable medical equipment, as Mike has also been doing, like wheelchairs, shower chairs, ceiling hoists, and so on. And Lisa plays the piano, sits with Brooke, organizes things like guitar expeditions, and keeps an eye on the proliferation of sticky notes all over the house. In general, it’s wonderful to have a house full of people, all (like all our friends) doing what they’re best at making things better for Brooke. It’s been a bit congested for visitors because of all the family around, but the house will be more or less empty again early in January—except, of course, for everybody working on accessibility modifications that need to be ready by Brooke’s projected arrival date, Feb. 3.

An old friend of mine from college who’s had a spinal cord injury tells me this is the most traumatic part of all, homecoming, but we’re looking forward to it just the same.


Monday, December 22, 2008

Watching grass grow

These are long days. Change happens at a barely perceptible rate, and like watching grass grow, you can’t actually see it happening. Days for Brooke are filled with huge challenges that seem so simple to others: learning to swallow; coughing, clearing secretions out of the lungs; sitting upright for several hours in a row. Getting a shower can take as long as an hour or even two. People who haven’t seen Brooke for a week or ten days say he looks dramatically better, and indeed he is better: better lungs, better blood pressure and body-temperature regulation, better speech. But if you see him all the time and if you’re wondering what the long-term prognosis is (after all, everyone asks), it’s in some ways like watching grass grow—you can’t see it happening, it’s so slow--but unlike grass, you can’t tell whether it actually is happening. There are some hints of some sensation in one arm, though no motion, and no guess yet about whether this means any restored function there. In the meantime, though, Brooke is learning about various assistive devices (computers, readers, etc.) and though never particularly technically inclined beforehand, obviously very interested in these: they can be one’s lifeline to the world.
But what he’s really interested in at the moment is people, and he’s still reeling (in the most positive of senses) from the overwhelming concern, admiration, and love that’s being expressed. People do wonderful things: one friend came today to hang a birdfeeder outside Brooke’s window, and just incidentally to review the huge sheaf of medical bills that have already poured in. (The hospital bills are fortunately pretty much entirely covered.) Somebody brought chocolate. Somebody came to read poetry. Two people came to read literary criticism. Somebody brought a secret surprise item. Somebody sent a poinsettia that brings holiday spirit into the room. Somebody (I’m not naming names, since a blog is a public document with at least one reporter following it and perhaps you don’t want your name revealed, though it will be easy to figure out who it is)—somebody brought his harmonica and two additional members of a blues band, and they played in Brooke’s room for a magical hour or so. I suppose the thinking is this—is you can’t go to the blues clubs anymore just yet, maybe they’ll come to you—anyway, the musicians and the little audience and Brooke were all jammed into his room, feeling the wail of the blues in a more than usually piercing way. Later somebody else came and just sat quietly, also a wonderful treat.
And that’s just today. So many people have been so wonderful to him over the past weeks, again and again. People have been reading to him, playing wonderful cello-and-guitar music, bringing curative amulets from distant cultures, talking with him about all sorts of things. And these are just the people who live in Salt Lake—there have been wonderful moments with out-of-towners too. And we are still opening cards and notes—some sent in mid-November, right after the accident (he was too sick for a long time to really digest them, but in a way they’re more meaningful now). He says he wants to hang all of them up on the wall (we will need a bigger room), since they remind him so vividly of what you’ve all meant to him. And finally, he says—and this is a direct quote—he doesn’t know how he can possibly give back all you’ve given to him.
Somebody wise said early on, “Today lungs. Tomorrow limbs.” The lungs are almost entirely well. We still don’t know yet what sort of return of limbs there will be, if any, but even today shows that if you just look at what is going on right now, not worrying about the future or regretting the past, you can still have a rich life even without them. That’s what Brooke’s been saying all along.

Wednesday, December 17, 2008

Makes us all think...

My name is Bill Hogenauer. I am Peggy and Brooke’s nephew (Peggy’s sister’s son.) But, this is not about who I am.

I have wanted to say so many things to Brooke and Peggy since the accident. I have wanted to tell them how sorry I am and how much I wish I could be there to support them. I want to look Brooke in the eyes and tell him how much I love him (something I have never done.) But, this is not about what I want.

I have been in denial about the accident, wishing it had never happened. I am an active person who bikes, hikes, skis and runs just like Brooke always did. Brooke’s accident has affected me in some ways more than if it had happened to me. I have experienced thoughts about life, love and mortality I never before contemplated. But, this is not about how I feel.

This is about Brooke.

Brooke is paralyzed from the neck down. He has spent the last few weeks just inches from death. His heart has actually stopped beating. He now receives his food through a tube and has other bodily functions regulated by machines or other able bodies. It is doubtful he will ever walk again. It is even more doubtful he will ever again be able to do all of the active things he loved to do.

Yet, despite all of this, Brooke is a man who has accepted his fate and is “starting a new life.” He looks forward to his future regardless of the hardship he may face. He can actually see opportunity for reflection and discovery in the face of tragedy. He has thus far lived his life like each day could be his last, and now he does this by force instead of by choice.

I can say with confidence that before Brooke’s accident I would not have been as accepting of such a fate. Would this accident have happened to me, I would have asked all of the typical questions like, “Why me?” I would feel that I didn’t deserve such a fate. I would resent the hand I was dealt and likely be bitter and angry. I would blame, doubt, and criticize those who disagreed. I would likely not have wanted to live.

Now I am unsure. Brooke’s accident has taken from him the things I take for granted every second of every day, yet he moves on without complaint or regret. While most would consider his “life” over, he considers it a chance to live anew. I hope I would feel the same. Brooke is the kind of person I would be fortunate to become.

So, all those things I wanted to say can be replaced with two simple statements; “Thank you, Brooke. I love you.”

But this is not about me.

Tuesday, December 16, 2008

Visualize Whirled Peas

A world-peace bumper sticker popular some years ago read “visualize whirled peas!” Okay, so do it. Whirled, or at least puréed, peas formed part of Brooke’s lunch today—the first full lunch, presented on a proper hospital tray--along with whirled mashed potatoes and (yum!) whirled macaroni and cheese. He didn’t complain. He thought it was wonderful, a simple thing like sitting up at 90º in bed (required for eating), savoring (optional), and swallowing (the focus of this particular element of rehab therapy). Every spoonful put into his mouth seemed to bring pleasure, though because he still has his feeding tube, it would be hard to say he was hungry. Soon, they’ll bring him food he has to chew, yet another milestone in his return to the world.
Funny, eating fine food in an elegant restaurant or a meal lovingly prepared by friends has always been a source of great pleasure; but not here: it’s the simple act of eating, or more precisely the condition of being able to eat, that’s the source of the pleasure, and that terrific, heady whirled-mac-and-cheese flavor just an added bonus. Besides, it's good practice for a new and very different future.

Friday, December 12, 2008

homes and modifications

Family in the picture again: Michael is here with granddaughter Kendra, and they’re zipping around doing things like installing the new fire extinguisher Brooke had just bought as a result of his doing the emergency responder training course, recaulking the kitchen sink (so as not to be a harbor for nasty microbes), and cooking Indian food. Today’s main enterprise has been meeting with someone from the Rehab staff to explore our house to see how it needs to be modified: how wide do the door openings need to be for a slick electric wheelchair, what about a wheel-in entry to the shower, how to rig up a sling to get into and out of bed. It’s quite amazing to see the house we’ve lived in for thirty years through new eyes, when you’re thinking about what makes a house a home—it’s not about décor, it’s not about impressing guests with elaborate dinner parties, it’s about feeling protected when you’re so vulnerable and wanting other people who might be uncomfortable about weird assistive equipment to feel at home with you there too.
But while we know that it’s necessary to prepare for the most constrained future, we also know that’s what’s the case at the moment may not be what’s the case in the long run, or the very longest run. One of the things we like best about the attitude of this rehab unit—an excellent place, if you need to be in such a place—is its capacity for very long-range thinking and refusal to take what’s the case at the moment as the final word. It is difficult to think about wheelchairs and lifts and voice-activated computer keyboards, but better to think about them now and discover that they may not all be as necessary in the future than be taken by surprise.
This has led us to think about how to communicate to you all out there with both realism and optimism, a delicate blend. Your optimism is a huge positive force for Brooke, but we know you can also read between the lines and see that while there’s real progress, it is slow. There’s a little lung infection at the moment, but likely under control; this slows things down but the general trend is very positive on almost all counts. Besides, he dressed in real clothes today for the first time, his nice soft fleece pants and favorite purple shirt. He looks as handsome as ever, just like himself.
Hard things happen to other people too. We were thinking about Alzheimers, which steals so many—this paralysis is like the obverse, all mind, no body, instead of all body, vanishing mind. They’re both hard, but in many ways that must be harder for those around who love them too.
Brooke says again that he loves hearing from people on the blog. I’m amazed at how many people still thank Sara for starting it—and we both thank her too. She’s is Seattle and so not as close to the source of information at the moment as she was earlier, but she’s still here in spirit (and will be back in actuality soon).

Tuesday, December 9, 2008

reflections on rehab

Hi, this is Peggy more or less taking dictation from Brooke a day or so ago—at last, he’s beginning to be able to respond to the blog himself:

“I’ve been overwhelmed by the number of wonderful messages I have received from all of you. I have so much I want to say but it hasn’t quite gelled yet; it’s something about love. I’m not afraid, I’m not angry; I’m looking forward to a new life…”

but at that point exhaustion from the first day of rehab took over. I’ve been staying in the Rehab unit with him; here’s what we were talking about later that evening (it’s amazing that you can have a genuine conversation even when one of you has to mouth and the other lip-read). We were musing on the claim that we live in a society that encourages people to define themselves in terms of what they have: big house, slick clothes, huge flatscreen TV. This, it is said, is shallow. But we often measure our lives in terms of what we do: hiking, biking, traveling across continents to exotic places, dancing all night in undiscovered, lowdown backwoods blues joints. But this seems to have its own sort of shallowness: while doing things is way better than having things, they both seem to lack some kind of internalized, reflective depth. When Brooke and I think about the future, as best we can at the moment, we both recognize that while we’ve never much measured our fortunes by the things we have (how would you assess two fifteen-year-old cars, for example?), but we sure having been doing a lot of things. That is bound to change; but what will replace it is what we’re both eager to discover. Brooke has always been way ahead in exploring the growth of the mind (maybe this comes from reading too much Wordsworth), but if we can avoid the traps of regret and despair there could be some really interesting stuff ahead.
Clearly one interesting thing is discovering the deeper nature of friendship. Some friendships are built on collecting things—people with mutual hobbies, for example—and some on doing things—sports buddies, for example. But some friendships, even though they have or have had some of those fine having-and-doing elements, go beyond that: they’re the deepest ones, ones that seem to flourish just in being in the proximity of each other, just in being somehow connected, without having or doing anything. (This is Peggy, making all this stuff up—but it’s what I’m seeing as many of you come to visit. There’s something special about friendship that’s going on here.)
No doubt there’s more. Brooke keeps mouthing that there’s so much he wants to say, and when the respiratory therapists adjust his trach so that he can speak (they do this by deflating a balloon-like cuff that goes around the outside of the plastic tube that sits in his windpipe), he speaks practically nonstop. But this can only be permitted for short periods each day so far, until the last of the lung problems are finally cleared up. In the meantime, we can watch the monitor on the ventilator as he actually takes repeated breaths on his own, more good news.
So what’s happening in rehab? He has about four hours of therapy a day with different specialists: physical therapy, occupational therapy, speech therapy, even recreational therapy (I have yet to discover what this is). Yesterday he got to swallow ice chips with a blue dye (to see if anything went down the wrong way—answer, no), and today it was—halleuja—real food, applesauce, albeit also with blue dye (still okay). He’s able to sit up in an elaborate motorized wheelchair (really slick, with a bright yellow chassis, price tag $30,000) that you can operate by moving your head against one side of the headrest or other; I’ve been measuring our kitchen door to see if a chariot like this will fit through), and with a sort of pulley arrangement, be put into a shower. These feel like big gains. And tomorrow it’s clothes, no more hospital gowns—the whole idea here is to adapt to whatever functionality is possible.
And so what will likely be several months of rehab begins. It’ll be slow, but we’ve been spending the evenings listening to CDs that various people have brought, finally opening a huge pile of cards that we never could read before (some sent in mid-November!—but they’re even more welcome now), and just talking. There’s a lot to say.
He’s got a roommate now, a nice younger man with a C5 fracture from falling off his porch. Life brings such sudden changes. But he seems to like the classical music that emanates from Brooke’s side of the room so there is the prospect of a congenial arrangement here. Visiting is now probably best from 12-1, or in the late afternoon (after 4), or evenings, but you can phone me anytime so see if it’s a good moment, perhaps sneaking in for just a few moments between the therapy sessions. They work them hard here. Brooke likes that.


The most amazing sound

I don't have much of an update - probably will have more tomorrow. But for now I just want to share the experience I had yesterday. I happened to call at the exact moment that the speech therapist was there having Brooke practice with the speaking valve. Mom held the phone to Brooke's face and I actually got to hear his voice. I can't even describe how wonderful a sound it was - I burst into tears of joy - I finally felt like this broken man was somehow whole again. I've always known that 'Brookie' was still in there, but to hear him say my name, hear him talk about other people in his passionate way, hear him say that he remembered something I told him on day 2 of this whole ordeal... well it was incredible and he really became Brooke again. His strength and courage continue to astound me. I hope you all get to experience his voice in the near future as it was an amazing sound.

Saturday, December 6, 2008

Visitors welcome again; don't be misled by headline

Brooke has moved to the Rehab 2 unit, and while it was a rather rough arrival (though not as rough as the last time he moved from one unit to another), he now seems ready for visitors again. During the week he’ll have scheduled therapy sessions totaling about three and a half hours a day (with rest periods in between), though we won’t know what the exact schedule is until that morning. Sundays there are no therapy sessions, so he’s free all the time (hint, but not too big a hint). There are still lots of downs as well as ups, and they’re hard to predict, but seeing friends really means a lot to him—even if visits sometimes have to be very brief. We’re sorry about all the times when visitors had to be kept away (there were some really hard times)—I know there were days when ten or fifteen people were turned away, and I haven’t any idea of who—many, many apologies to you, whoever you are. He still tires very easily and cannot really talk (except sometimes a few words in a low growl, voicing around the trach) so the choice is lip-reading or just exchanging smiles, but he does like it when people talk to him or read to him or tell him stories.

By the way, don’t be misled by the headline if you saw it in a recent issue of the Chrony (for those of you who are out of town, that’s the university’s student newspaper): “Former English Professor Recovering from Bike Crash.” “Recovering” is an accurate term if it’s taken just to mean moving out of an intensive-care unit where life might be on the line into a less acute unit, but please don’t take it to mean that he’ll be striding out of rehab and heading back into the hills in a week or two. He won’t. And if you do come to see him, please don’t ask for evidence of function—“let’s see those toes wiggle”—they’re not wiggling currently and there isn’t anything else to see, except how a perfect accident can lay waste to a vigorous, handsome, wonderful body. On the other hand, it is still too soon to have any realistic idea of long-term function, so we can all keep hoping for “recovery” in the real sense.

So visitors are welcome again—though of course don’t all come at once. And of course this could change at any moment—the major lesson we’re learning here is that there aren’t any guarantees. There aren’t any fixed visiting hours, but by next week Brooke will have a roommate, so we need to be sure there aren’t too many lengthy readings of arcane literary texts if the roommate turns out to prefer GQ or Sports Illustrated. If you want to know whether it seems a good moment, just call me on my cellphone 824-9160 and I’ll give you my best guess about how Brooke will be by the time you get here. And speaking of getting here, it’s a real challenge—Rehab 2 is on the second floor in the main (old) part of the hospital, but to find it it’s probably best to ask at the front desk. And be sure to drop breadcrumbs so you can find your way out.


Friday, December 5, 2008

Nightlife in the hospital

The IMCU stepdown unit, where Brooke is now, has some real advantages, chief among them comparative quiet and a fold-out hideabed couch. The staff is so kindly that they will even bring you sheets and blankets, and let a Significant Other sleep here overnight. This is my third night here with Brooke—we’re trying to think of it as a swank hotel in some remote exotic place.

So here it is 12:24 am and the respiratory tech has just arrived for the breathing treatment—this happens every four hours around the clock, and consists of checking the numbers on the ventilator, putting albuterol and mucomist in vent lines (this opens up the bronchii and breaks up the secretions), then using a percussor to pound on his chest (Brooke likes this, even though he can’t feel most of it), then sucking out the secretions through his trach. I have a hard time watching this part of it but B is pretty stoic. But it’s more fun this evening—the tech is from Puerto Rico, from an area we’ve traveled in years ago, and wonderful guy. So we put a wild disk of Cuban music on the CD player and are, well, partying.

And the tech will come back at 4:24am for more.

It’s nice to share the lighthearted moments with you. They’re not all that way. Indeed, this is more like a rollercoaster ride than a continuing party—hard uphill climbs, fearsome downhill swoops, a few breathtaking views, but for this one a pretty hefty entrance fee.

I’ve been reading Brooke the current comments on the blog and it is amazingly energizing to him. Indeed, that’s how we got into such a party mood, even before the respiratory tech arrived. Thank you guys for writing.


Thursday, December 4, 2008

And the words come tumbling out...

After almost 3 weeks of not being able to audibly speak, Brooke was finally given a chance to use his voice today. They fitted him with a 'speaking valve' and apparently a waterfall of words came pouring out - you can imagine how much his amazing and emotional mind had to say about all of this. Mom says his voice sounds like his own so that must be incredibly comforting. He is still not allowed to have the valve on for long periods of time, as it is challenging for his lungs. But I'm sure that being able to converse, even briefly, will ease a bit of his tension.

He continues to make some progress towards being weaned off the ventilator. Some doctors are optimistic, some are pessimistic, but all admit that it is a very long process (weeks/months) and it is still too early to tell whether he will get off of it completely. It's amazing how important it has become to work toward the most immediate goal, rather than focusing on the big picture, which of course is still so fragile and scary.

He had another 'Cadillac' ride today in preparation for being moved to Rehab, which they still say will be tomorrow, but that's hospital time so we'll let you know when it really happens!

He had 15 visitors yesterday, which was very tiring for him. So don't be surprised if he's sleeping or you're turned away at the door - remember he still needs his rest. He loves seeing all of you, but if he seems tired, try just sitting by his side instead of engaging him in conversation or even thought. Sometimes quiet company is all he needs.

Again, thanks for all your love and support.

Tuesday, December 2, 2008

Having trouble leaving a comment?

I've heard that some of you are having trouble leaving comments on the blog - and we want to make sure Brookie hears from everyone who wants to leave a message!!

If you are a first time blogger it may be unclear, so here are the steps in a nutshell:

Step 1: Open blog, read post and find a small underlined link directly under the post on the right side. It will say '0 comments' or '12 comments' or however many comments there are.
Step 2: Click on that link and it will bring you to the comments page.
Step 3: Write your comment in the box on the right (anyone who has access to the blog will be able to see your comment, so keep that in mind)

(From here, follow whichever step 4 relates to you...)
Step 4a: If you are already 'logged in' to your google account, you will be able to publish your comment immediately by clicking on the button that says Publish.
Step 4b: If you are not already logged in, you will need to do that (sign in boxes will be below the comment box) and then you can publish the comment.
Step 4c: If you don't have an account, you will need to create one before you can publish. Once you log in, follow steps above.

I'm guessing most people hit a snag if they don't have a google/blogger account so watch for that step.

If you still have questions or are having trouble, please feel free to email me directly at sarabpearson@hotmail.com and I will walk you through the process. Good luck bloggers!

Brooke is on the 5th floor now

Just a quick note to let you know that Brooke has 'graduated' to the Intermediate care unit, on the 5th floor. This is a temporary stop until he goes to the Rehab unit, sometime later this week.

For those of you wanting to visit, I think they still only allow 2 at a time. And please refrain from visiting if you have a cold, the flu or even the sniffles... his lungs are still very fragile and being exposed to any bug, even the smallest, can cause trouble.

The picture below was taken on his second 'Cadillac' ride, where he was able to sit in the sunshine for a few minutes (granted, it was just in the hospital parking lot, but he still loved it) and listen to Lou B. play 'Amazing Grace' on his harmonica. The skies had parted and he had a nice view of the lake and the mountains. I'm told it was an incredibly moving experience to see him relish in something we take for granted every day.

Again, thank you all for finding your own unique way to keep his spirits up, and keeping mom fed!

Saturday, November 29, 2008

Cadillac Ride to the mountains

This is Lisa, Brooke's sister, for those I've not yet met. Blogging is a whole new experience for me, but like so many other things I might have closed my mind to just a few short weeks ago, I am jumping in with abandon. I have been overwhelmed by the outpouring of love and support by Brooke's friends and by family members since this terrible event and it has been a great source of strength for all of us.
Brooke had a very good day after feeling low for the past few. We can only just imagine all the thoughts going through his mind. He's needed some encouragement, though, and after a good night's sleep (finally), he woke up asking if he might be able to be wheeled out to see the world outside. He was placed in a cardiac chair, otherwise known as The Cadillac, and carted out to a part of the hospital with great picture windows on either side, surrounded by his team of nurses pulling ventilators and heart monitors. His eyes, always so expressive, were serene as he drank in the beauty of the mountains he loves so well. This kind of story, which 2 weeks ago would have seemed so abstract to me.... someone else's small victory in the face of tragedy.... someone else's story.... has taken on a very new and wonderful meaning.
We hope that soon he will be moved to the intermediate care unit and, from there, to the Rehabilitation Center here. In the meantime, keep praying, sending cosmic energy, rubbing your magic talismen, whatever you do, for Brookie.

Friday, November 28, 2008

tough times

Sara is back in Seattle so I'm blogging from Brooke's bedside in the hospital (it's not at all unusual for him to see me typing away on my computer while he contemplates some interesting interior thought). The past couple of days have been tough--even though his lung problem is clearing up, the cumulative frustration of two weeks in which you can't move or speak is taking its toll. You can't control anything, and you can't make your wishes known. Even though he can formulate his thoughts and mouth them in what are obviously long, full sentences, we can't lip-read well enough to catch it all. Many of you who've been to see him know this, how difficult it is to have a conversation even despite the wonderful expressiveness of his eyes. I've had a long conversation today with the attending physician here in the SICU, and understand that the reason they're not yet able to put a speaking cap on the ventilator connection is that in using it one exhales fully, but you don't want to do this if there's still a lung problem and so risk lung collapse. Thus it may be awhile longer before he gets a speaking cap, but certainly something to look forward to. Brooke's also looking forward to moving--perhaps tomorrow--to the intermediate care unit here, a sort of transitional space between the critical-care ICU and his longer-term destination in the rehab unit. Moving is a sign of progress, long awaited.

Spending a couple of weeks hanging around an ICU invites the sort of rumination about what you'd change or fix if you could. Much is really quite wonderful here (if you have to be here at all)--for example, the nursing staff is terrific, humane, considerate. But here's my first suggestion: I'd try to make sure there's somebody around who can lip-read effectively--hiring somebody with a hearing impairment would be a good way to do that, regardless of what capacity they were hired in. I'm told that there aren't too many cases here in which somebody on a vent is also competent and alert--many still more unfortunate folks come in with severe head injuries--but it is very difficult to watch the frustration of someone who wants so badly to talk but can't use his hands to write, can't use his vocal chords to make sounds, and can't even gesticulate except with his eyes.

So these are tough times. But the good news is that he's more able to have visitors, and is generally brightened by seeing people. Many many apologies to those who've been turned away by the nursing staff over the past couple of days, or who came during the excluded hours (no visitors are allowed 7:00-8:30 am and again no visitors 7:00-8:30 pm; I don't know what the rules are in the intermediate unit). It's impossible to say from moment to moment just what his condition will be, but I think he's missing being able to see people and would welcome short, not-too-strenuous visits again, sometime over the next several days.

Wednesday, November 26, 2008

Brooke - Quick update

Once again, thank you all for your incredible loyalty to the Blog and Brooke's condition. I am amazed (but not surprised) at what a following Brooke has!

Just a few updates today. Brooke had a 'filter' put in to prevent any blood clots, which is another anxiety relieving step for everyone. Although not a pleasant procedure, he's happy to have yet one more preventative measure in place.

And here's an amusing story - anyone who knows my brother, Mike, knows that he has connections everywhere. So it's no shock that he ran into a medical supply rep that he knows from long ago in the hospital elevator (never mind that neither of them are from Utah!). Mike mentioned that Brooke's bed was too small, and guess what, a new one came today! A big, LONG, bright red one. Brooke is quite pleased with it and doesn't have to worry about his feet hanging off the edge. Another small victory!

The rest has been very good for him, but he's been missing his visitors. He'll probably be ready to see some of you in the next few days.

Brooke sends his love to everyone for the Thanksgiving holiday and I'll speak for him when I say that he, and our entire family, gives thanks to each and every one of you for caring so much and showing your love in so many various ways.

I know where my thoughts will be tomorrow. Happy Thanksgiving.

Tuesday, November 25, 2008

One step back, other steps forward

First, for those following Brooke's progress minute by minute, here's the not-so-good news: last night, as he was being transferred out of the ICU to an intermediate care unit, he had a full-code arrest--high drama of the sort you might see on E.R.--sobering when it's a TV fiction, terrifying when it's someone you love. But the crash team was right here, brought him back easily, and--here's the good news--this morning he is back in the ICU just as bright-eyed as he was the day before, largely without any recollection of what happened and still completely cognitively intact. Both the surgeon and the cardiology folks agree that this doesn't indicate any problem with his heart--always a fierce, strong, athletic thing--but with the challenges to homeostasis his body is currently undergoing, but that can resolve in the future. So there's a way to protect against further arrests in the future: he's just had a pacer put in that will step in if any such lapses in heartbeat occur, and it gives him--and all the rest of us--a measure of security. At the moment he is resting comfortably and in remarkably good cheer, given all that has happened.

That's the physical news. The mental news is way more interesting--yesterday he said (mouthed, but we can lip-read) that because of all this, he is beginning to understand much more who is actually is, and this morning he said--he was talking about all the concern and love he's been shown (overwhelming and wonderful, I have to say), that this has been "transformative" for him. It's remarkable what can go on in someone who, at the moment, is mostly all head.

This is my first post to the blog, but I want to tell you how much hearing about people reading the blog and seeing your responses has meant to me, to Brooke, to the rest of the family, and perhaps to all of us. Thanks more than you can know,


PS Sorry that he just can't handle visitors today, after the pacer surgery, and we want to keep things pretty quiet for the next day or two, but I know he'll appreciate visits soon.

Monday, November 24, 2008

Brooke - Monday, 9:00pm

Brooke is still in the ICU and had another exhausting day. Although he very much appreciates the visitors, he's not getting the sleep he needs to be able to heal. Both he and mom have a hard time saying no when people come by (because he does WANT to see you), so we're going to have to say it for him.

We're asking that you please refrain from visiting him in the next few days. He really, really needs to rest and sleep so he can stabilize and get out of the ICU. Please don't take our request personally - it's strictly a medical/sleep issue.

Please continue to post comments to the blog, as we read those to him and he enjoys each and every one.

We'll let you know when he feels stronger and ready for visitors again. Thanks so much.

Sunday, November 23, 2008

Brooke - Sunday, 10:00 pm

There's no significant change to report from today. Brooke is still in the SICU and will remain there for at least a few more days, until his lungs are healthier (he still has a bit of lingering pneumonia). He feels comfortable and safe there, so that's the best place for him right now. We are thankful that although progress is very slow, it seems to be moving in the right direction. We are aware that could easily change, so we're just thankful for the small victories.

Peggy and the rest of the family have been overwhelmed with all the love expressed through the huge amounts of food. Thank you for nourishing us and making it possible to avoid the hospital cafeteria!

Saturday, November 22, 2008

Brooke - Saturday, 10:00 pm

Brooke had a rough night last night, but ended up having a good day despite being very tired. He is almost weaned off the dopamine and his body has been working hard to keep his blood pressure up. The therapists have given him a 'sip and puff' straw which allows him to either call the nurse (sip) or, get this, control the tv by puffing. Apparently he's been somewhat of a closet football fan, because he was eagerly awaiting the Utah/BYU game today. When I asked him when the last time he watched a football game was, he said he watched this same match-up three years ago. Who knew?!? He was quite engrossed with the game and it gave him something else to focus on for a few hours.

I am back in Seattle so the blog postings may become less frequent. Ideally I will post an update everyday, but please forgive me if I miss a day or two. Thanks again for everyone's support.

Friday, November 21, 2008

Brooke - Friday 10pm

I'm with Brooke right now and I asked him if there was anything he wanted to say on the blog. He said, "tell them I love them."

Brooke - Friday, 6:00pm

Today was a surprisingly good day. Brooke was in good spirits as he learns to communicate better with his trach. He even wanted to watch TV, which is so unlike him. His lungs are definitely improving and they've stopped using the heavy duty antibiotics (he is just on the common garden variety now). There is still work to be done on his lungs and he will remain in the SICU until the lungs are more stable. Because he is on a ventilator, his lungs are compromised and susceptible to even the smallest of germs and bugs. Once SICU considers him stable, he will be moved to an acute care floor and then to the rehab unit. Doctors from many different specialties (rehab, occupational therapy, etc.) came to see him today, giving us the indication that they are beginning to look long term, rather than focusing on day-to-day survival.

Someone asked how Peggy is doing... she is doing OK now, given that she has such a huge family and friend support network. I worry how she will deal with all of this once the family leaves (we will be back but not all together), so I'm hoping that everyone will rally around her in the next few weeks (and months). She will need people to visit and sit with Brooke (since she can't be there all the time) and make sure that she is taking care of herself.

Please continue your good wishes and thoughts, as we can all but feel the energy being sent his way.

Thursday, November 20, 2008

Brooke - Thursday, 6:00

The trach is in - horray! The surgery went fine and he's much happier now that we can read his lips. It's a learning process for all of us as he learns to slow down and clearly move his mouth and we learn how to interpret! As always he has a lot to say, but is quite exhausted as expected.

Especially post surgery, the ICU is insisting that visitors be accompanied by a family member, so if you don't see one of us in the hall (it's hard to miss our camp), please either wait or call us. Thanks.

Many many heartfelt thanks to all of you who have left food (and wine!) for us. We so need, and appreciate, the nourishment.

Brooke - Thursday, noon

We are still waiting for an OR so Brooke can get the tracheotomy, but they have 'promised' he will get it today. The neck surgeon checked on Brooke this morning and asked him to move his foot. HE DID!!!!! Of course we have to be VERY guarded/realistic about what this means, but I know that it brought me great joy to hear/see that. And the surgeon's comment? AWESOME. The road ahead is still incredibly bumpy and long, but at least it's a little glimmer of hope to hold on to.

Wednesday, November 19, 2008

Brooke - Wednesday, 10:00 pm

There's no update on the tracheotomy, because it didn't happen. He was continually bumped as more emergent cases came in ahead of him. They consider this an 'add on' surgery, so he's just not first in line. They have told us that they are requesting 'first thing' tomorrow (9 am), but we all know that's not something we can rely on. Brooke is incredibly eager (and quite anxious) to have this surgery and is extremely frustrated that it didn't happen today (he was continually looking at the clock all day and wondering about the delay). We continue to find comfort in his eyes and face and know that his mind his still all there. AND, today there was some small movement in his feet, although it's still too early to give a longer prognosis because the spinal cord is still swollen.

For those of you in the SLC area, he welcomes visitors but can only handle 3 or 4 a day while he is still in the ICU. It's quite exhausting for him because he wants to communicate and connect on some level and it takes all his energy to do that. The ICU has also requested that you be joined by a family member when visiting so that we can provide some level of consistency. All that to say, feel free to stop by the hospital, just know that you might not get to see him right then. Visiting will be easier when he's moved to an intermediate facility - of course we will update you when that happens.

Brooke - Wednesday, 1:00 pm

Just a quick update - Brooke will be going into surgery this afternoon for his tracheotomy. There have been a few hospital delays but otherwise we're on schedule. We'll send another update later tonight. Thanks for all the love and support.

Tuesday, November 18, 2008

Brooke - Tuesday, 8pm

It's the end of another long day at the hospital, but today was better than yesterday. Brooke's condition remains critical as his lungs continue to give him trouble. They are working hard to get the lungs clean and are making progress. They expect to do his tracheotomy tomorrow in order to remove the intubation tube from his mouth, however he remains dependent on the ventilator. This will enable him to better communicate and give him a big boost. In terms of his mobility, he is able to shrug his shoulders with vigor. His face remains incredibly expressive and wonderful. The best news is that his spirit was much better today. He enjoyed his visitors, smiled at stories and continued to endear himself to his nurses. In typical Brooke fashion, he is very interested in, and has many questions about his condition as well as what's going on in the rest of the world.

Brooke - Tuesday, 11/18 - 10:00 AM

Brooke is still in the Surgical ICU. He is currently fighting some complications in his lungs, fluid build up etc and a fever. He is on a ventilator and groggy from the various drugs, but fully aware and as communicative as can be expected through lip reading, nods and a letter board. Once his lung problems are solved the doctors hope to go ahead and install a trach and remove the mouth tube. The doctors and nurses are doing their best. Yesterday he did indicate that he could feel the nurses touch tests on his hands and feet, we are guardedly hopeful about this. The doctors and staff at the hospital have been wonderful.


We've started this blog to keep friends and family updated as to Brooke's recovery after his bicycle accident.
Here is a link to the Salt Lake Tribune article about the accident: