Day 4, morning

I saw Kathy several times yesterday, and again this morning, and was allowed to hold her hand. I’m happy to report that no progress has been made, which apparently is a good thing. Any significant change at this stage of her treatment means that one or more of her monitors will have left baseline, and, through delicate intervention, would need to be corrected.

The anticipated vascular spasms, which I’m told typically start around day three but might not occur until much later, so far have not shown their shudder. But they are almost certainly sure to show. So I suppose that’s a neutral day 4 outcome.

By all appearances Kathy is unresponsive. That’s because she is being held under the deepest sedation possible, which is normal for Kathy’s condition type. But being visibly unresponsive doesn’t mean she hasn’t registered the whispered love that she has now received from your concerned messages. It must be true, it just has to be: the deeper the sedation, the more profoundly felt is the subterranean flow of warmth. Immeasurable thanks to all of you for your posts and emails, they are truly a steadying influence.

Nurses can sometimes be demanding in their need to know what normal people know not to know. I know. I’m married to one. I’ve heard from a few of them in the past few days. So those of you not in the profession might want to skip the following paragraph.

Okay, so it was a subarachnoid hemorrhage brought on by a ruptured aneurism in the right frontal lobe, where most of the bleeding still shows but is draining as well as can be expected, with minimal, treatable clotting. This morning they’re going to try to insert another draining tube, this time left frontal, to help assure that if one clogs, the other will maintain the flow. For more information on what the above means, talk to one of your neuro friends in the hospital.

Hospitals are unique and inspiring places. They are democratic – people from all walks of life, each one given respect by all others. Conversations among small and large groups are, in general, more meaningful and intently conducted than elsewhere. Eyes of people grappling with life-rocking change. Overwhelming sadness and joy pervade the atmosphere.

And for this I am most grateful: tears are looked upon as normal.

Day 5.

As ever, Kathy is the epitome of composure. She is now stillness personified, with her life, and every part of her in the balance. The medical staff weighs this against that, that against another this, constantly measuring and monitoring and adjusting.

As they’ve explained it to me there are three main concerns, each of which requires different treatments that often play against one another. First are vaso spasms, where vessels in the brain get “angry,” because of the hemorrhaged blood, and start misbehaving, which can cause loss of blood flow (i.e., oxygen). They monitor daily for signs of her brain trending toward spasms, using a TCD (Transcranial Doppler) to anticipate an event of this kind. They can treat it pharmaceutically to an extent, but often have to go in again, using angiography as they did to seal off the aneurism, to insert some special juice (sorry nurses) directly into the offending vessel. Yesterday’s TCD was good, today’s yet to come. Also, they’re concerned about intracranial pressure, which basically I guess means swelling of the brain, and they’ll have to carefully watch and treat that before they can start to wake her up. And, they’re concerned about pneumonia, and therefore heart failure, because of her having aspirated as she vomited when the aneurism ruptured, and because it’s very tricky to withdraw fluids from her lungs (obviously she can’t do that herself). Her brain wants fluids, her lungs don’t; what’s good for one is bad for the other. Everything is balance; the heavy sedation is there in part so Kathy’s body doesn’t try to make corrections that the equipment and staff can make more elaborately while she’s completely still.

I have often thought Kathy is exceptionally beautiful while she sleeps. Without moving a hairbreadth she emanates life. Her room is still, like nighttime in our bedroom, except for periodic monitor bleeps and hummings, the sound of a nurse’s soft footsteps, and the distant murmurings from the nurses’ station 40 feet away. But the reassuring sound of her steady breathing is just like 3 am in Morro Bay. They need her to have complete mind rest, no stimulation. I brought books to read to her, vials of aromatic oils to place near her, smooth and semi-smooth surfaces to rub along her forearm – none of it allowed. Sometimes they let me hold her right hand (the one with free fingers), and when the monitors say it’s okay I can whisper my love, my special name for her, news she’ll want to hear, and the love of friends and family who’ve sent prayers and heartfelt support her way.

There are tubes entering and exiting her head and body through natural and medical-made orifices, and hoses, bruises, crazy penciling like tattoos with no apparent meaning, gel smears, taping and bandaging everywhere there’s an available place on her body.

Still, incredibly, the angelic radiance I fell in love with 37 years ago shines through, brighter than ever.

Kathy, please come back.

Day 6, morning

Thank you, each and every one of you, for your prayers and words of love for Kathy. And your words of encouragement to me help beyond any measure I can express, not just for my well being but for Kathy especially, our beautiful Kathy who needs them most, because they really do make me stronger, and that strengthening supports me when I’m with her. Surely she doesn’t want to hear your flow of love through my faltering emotions.

Every sentiment helps tons. Our good friends Kevin and Candy visited Friday on their way back to Morro Bay from Oxnard. It was great to have their encouraging hugs and listen to familiar voices with reassuring words, especially since they have had a similar experience. Kevin had a stroke a few years back and even spent time at the Cottage Hospital Rehab center here in Santa Barbara where, hopefully, Kathy will become queen for a time. And last night my lovely niece Anna, one of Kathy and my favorite people in our world, drove up from San Clemente for an overnighter, a misty-eyed dinner, and the kind of heart-to-heart uplifting conversations that could only happen with someone who has been close to Kathy since Anna was a baby.  Anna is now a Kathy whisperer. Abby and Paige, the most beautiful, loving daughters imaginable (don’t get me started) keep pressing me to come down from Berkeley and Seattle, but I’ve asked them to hold off until their mother is brought around to consciousness. My vision for Kathy is that when she first arises from her coma and opens her eyes to the world, she will see their adoring, adorable faces.

Yesterday’s Doppler reading was good, another day forestalling the (almost inevitable) onset of vaso spasms. The longer they stay at bay, the better. Also, so far here is no evidence of alarming pneumonia bacteria in Kathy’s lungs. That’s real big. The ICP (Intra Cranial Pressure) readings are fluctuating more than is within a comfort zone, but deeper sedation appears to be helping.

The excitement of the day was a malfunctioning bed that must have required a mega team of specialists to transfer Kathy to a new bed, working with the maze of wirestubeshosestubescablesdrainswiresmanifoldsmoretubesandwires. By the time Anna and I arrived shortly afterwards the general relief at the nurses’ station was palpable.

Her usual composed self, Kathy was totally unfazed.

Thank you again, and a thousand times over for your posts, emails, voice mails, texts, and projected thoughts of well-being and love. My expectation is that when I show Kathy a printout of all the caring messages we’ve received she will look at me condescendingly and lovingly as the clueless person she knows me sometimes to be, and ask me why I’m showing them to her, that she heard me whisper them to her in the hospital and they’ve been burned into her heart ever since.

Day 7, morning

Encouraging news from SICU Room 18: yesterday’s Doppler showed continued non activity on the vaso spasm front, and all other readings continue within acceptable ranges. I was present for the entire 45-minute procedure, and had to watch Kathy’s monitors go a little crazy. She doesn’t like the TCP procedure. Aine, the Doppler specialist, had to back off several times to let Kathy settle down before proceeding, and my nerves were fluctuating right along with Kathy’s blood pressure. All’s good, Aine said when it was over with…nothing to it from her standpoint.

Best of all: after a good night’s sleep I’ve come to believe in my heart what her doctor told me: that there’s a very good chance Kathy will recover to live a normal life. What’s normal? I’ve used the word “normal” with her nurses and nurse practitioners, asking them a thousand questions, variants on “Is that normal?” When I ask whether such and such a monitor readout, or a procedure, or a slight puffiness that wasn’t there before, or any number of things, is normal, they will tell me No, not really. Abnormal? Well, no. Usual? Well, I wouldn’t say usual. Unusual? No. They’re not being evasive; in fact the entire staff is quite straightforward, really knowledgeable, and eager to be helpful. It’s just, I guess, that with the brain – the mind – everything that happens appears to be a unique, incredibly complex expression of an event or a series of events, affecting other parts of itself and the entire body, an expression not anticipated and not unexpected. Every patient reacts differently to everything. Every second changes the possibilities for what the next second might become.

Still, I crave an answer. So I pressed Dr. Zauner (the truly admirable Dr. Zauner) to explain what he means when he says Kathy has a good chance of living a normal life. Do you mean a normal life or a “normal” life (finger quotation marks)? For example, Kathy and I love to hike…do you mean we might be able to continue hiking as usual? No hesitation from Dr.Z: “Yes.” Okay, you’re a doctor, and you know very well that if a nurse makes one error of judgment, the consequences could be dire…is it possible she will be able to go back to work? “Yes, of course.”

I’ve never been a good crier, haven’t really understood how, or why. Now I know. In the past week I’ve sobbed river tears of sadness, of fear and, finally, god bless today, tears of joy.

Come on, Kathy.

Day 7 afternoon update

Kathy’s Doppler reading was fine again today, another relief. Her other systems were (mostly) stable overnight. There’s been some increase in urine flow, which can be (but isn’t necessarily) a precursor of vaso spasms. They’ll be watching that very closely. Should the spasms start, the first line of defense will be medical, likely an increase in blood pressure and added fluid, to urge the blood to flow through the affected vessels more readily. Only if that doesn’t do the trick would they have to wheel her back into the angio room for surgical intervention. Right now, Dr. Tenser (who is vacationing Dr. Zaunter’s partner) tells me all remains hopeful (and are you sleeping well, Richard?).

I don’t know how to say what I feel about the outpouring of love and support from so many of our caring, supportive friends. It’s miles past humbling. I mentioned my tears of sadness and of fear and of joy, but the emotions that bring tears when I read your responses are something else. My daughter Paige has said she cries tears of gratitude, and until now I thought I understood what she meant. Once, when Kathy, Abby, Paige and I were in Berkeley thinking lunch, we happened by a place called Café Gratitude. Paige yelled Stop! Stop! We did of course, and now I vow we will be sure to return.

The adage Misery Loves Company doesn’t work for me. All last week, in the deepest funk I’d ever imagined, I walked between the motel where I’m staying and SICU 18 with my head down, not even wanting to make eye contact with another human being. Now, with renewed hope for Kathy, I’ve made a new very close friend. Her name is Josephine, and her son Bobby rests in his own deep, induced coma next door in SICU 17. Bobby is 19, and has a head injury from a car accident. Josephine waits vigilantly outside Bobby’s room, looking through the window at the bank of monitors as I do through Kathy’s window, waiting for the opportunity to hold his hand and whisper her love. Our rooms are at the very end of the unit, where quiet prevails. In low murmurs Josephine and I compare notes on what the doctors have told us, where the readings are and where they have been, straining to know what they tell and to unearth the positives. Bobby came in the same day Kathy did, and it’s taken us until yesterday to meet. And now we’re comrades in one another’s arms. Hope, not misery. Or as Paige says, faith not fear.

Our close friend Lisa Harper Henderson came by yesterday and was able to gaze upon our sleeping beauty. Lisa was on her way to San Diego to be with her husband David and our family of friends there, as David’s father Tom took a fall and was headed to hip surgery, a difficult prospect for an elderly man dealing with other health challenges. My heartfelt hopes and wishes go out to David’s mom Connie, sister Lisa and the rest of the family. Tom is one feisty gentleman; I know he’ll be alright. He’s a man Kathy and I have loved and admired for many years.

Make a new friend, I tell you it’s therapeutic. And say a prayer, think a good thought, raise a glass, something hopeful, for Bobby, Tom and Kathy.

Thank you all.

Day 8, morning

The Doppler reading this morning again showed no signs of vessels misbehaving. Still, they’re pretty sure the vaso spasms will occur, and likely sometime in the next few days. Nothing showing to indicate that, except possibly some increased urine outflow, but that’s more a possible precursor than a predictor. The reason they expect it to happen is that, with a subarachnoid hemorrhage such as Kathy’s, the incidence of the spasms is exceedingly high. Usually they occur sometime between day 3 and day 15. If spasms don’t appear in that window, and no other signs prevent it, they’ll consider the very slow and critical process of awakening her. We’ll mark that anniversary on our calendar for special annual celebration.

Kathy is very high maintenance, just because of the seriousness of her stroke type, the extent of the hemorrhaging, and the heightened risk of pneumonia. But even more so because of an unusual fluctuation of her blood pressure and TCP’s.  Usually, when a patient’s BP increases so does the TCP, and vice versa. With Kathy, they’re acting inversely with each other. So regulating the balance is, literally, a minute-to-minute project. Or, really, from my observation, it’s an every 3-4 minute adjustment (not always, but much of the time). Keeping one in line throws the other out of kilter. Nursing is hard.

The pulmonary ICU doctor was in while I was there this morning, along with the ICU micrologist (?) doctor, discussing the plan for addressing fluid buildup in Kathy’s lungs. The might go in today or tomorrow and suck some of it out, a highly useful procedure but one that puts extra strain on BP. They’re going to schedule it for shortly after she gets her 1:00 pm BP meds. The discussion of alternatives took about 20 minutes. Doctoring is hard too.

Kathy loves dancing. When I went into her room today she was doing the shimmy. They had her bed vibrating her upper torso to loosen some of the fluid in her lungs. Then they put the whole bed on vibrate. People who know Kathy when we go out to hear music (Back Bay Betty! neuorology specialists kickass blues band) know that when she dances she exudes serenity. Some call it “doin’ the Kathy.” Jessica, today’s attending nurse, says that, curiously, when the bed goes on vibrate her BP goes down. I’m no medical authority but I could have told her that.

Come on, Kathy.

Day 9, morning

Big day yesterday for Kathy. First, worried about fluid buildup in her lungs, the pulmonary and micrologist doctors decided they’d better go in there and draw fluid out, despite the risk of upping Kathy’s BP to an uncomfortable level. Kathy performed beautifully (“tolerated” is the SICU terminology, “beautiful” is my translation), and the procedure was a great success (retrieved a lot of fluid). Too much fluid in the lungs, I’m told, is really the number one danger Kathy faces (pneumonia), despite all the stuff that’s happening in her brain.

I thought, okay good, great day. Then Dr. Zaunter’s office called to say the morning’s TCPs showed some of the much awaited, unwelcome but not unexpected vaso spasm activity, and they decided to go straight to angiogram rather than do the medical approach first, and can I come right over and sign off on it? Five minutes later they are prepping Kathy for the trip to the angio room. Four hours in surgery later Dr. Tensor tells me Kathy responded beautifully (my term). They inserted condene into two of the four arteries that, typically, are where the spasms occur. The two affected are in the frontal lobes, where the aneurism erupted and where most of Kathy’s bleeding resides. They might need to keep after those two vessels tomorrow or the next day with further angio intervention, but they promise they have a good handle on it. Nothing is expected from the back two but of course, like everything else, they will be carefully monitored. The Drs. Zaunter and Tensor team never fails to astound.

I spent the day not in SICU 18, Kathy’s and my usual haunt, but in my new favorite Santa Barbara restaurant, the hospital cafeteria. We’ve tried plenty, from the excellent taquerias to the destination dining palaces, but to my mind the cafeteria now stands tallest among Santa Barbara dining establishments. The food is fine, but what I like best, and I think Kathy will too, is the ambiance (open, clean, clatter of dishes, food trays, din of Spanish and English conversation), the cafeteria staff (friendly, upbeat, bilingual, extra sensitive to the special physical and emotional needs of the patrons) and the eclectic clientele (multi-ethnic, multi-generational, grouped, solitary, happy, sad, lots of elderly sitting alone, just about everything you can imagine). You can really lose yourself in a place like that. It’s an environment Kathy has plenty of experience with.

It was an anxious four hours for me. My mantra, “Come on Kathy,” kept reverberating in my head, and sometimes just popped out of my mouth (that’s okay, I’m not the only one who talks to himself there).

And I devised a plan for Kathy. We’re coming back to SB February 11 for a concert. I want for us to dine at the cafeteria. Afterwards we’ll go up the elevator to the second floor, turn right, turn right again, then left to the SICU nurses’ station, where, beaming with pride, I’ll  show her off to Sarah, Danielle, Jessica, Jeff, Erica, Stephanie, Lynn…whoever’s on that night. I know they’ll fall all over her, and she will meet them once again.

I want to see her embrace them. With her eyes wide open.

Day 10, morning

I am very saddened to say that Tom Henderson, our very close friend David Henderson’s father whom I mentioned in a previous blog, has passed away. Congenial, strong willed and vocal enough about it, just ask his unruly neighbors, hands-on dad, loving husband of many decades, and a master craftsman one of whose major contributions to the world of yachting was to pass his considerable woodworking talents down to his supremely talented son. I know he touched my life, and Kathy’s, in a unique way. Carry the torch, David. My heart goes out to Connie and the rest of our San Diego family who will feel his loss.

Bobby, Kathy’s next-room neighbor with many of the same brain challenges, faces an uphill struggle in some ways steeper than Kathy’s.  In the afternoon, when Dr. Tensor called to tell me that Kathy’s TCPs were climbing again and they were prepping Kathy for another angio, I rushed to SICU 18 to whisper love and encouragement. But what I found was empty beds in 17 and 18. Both Kathy and Bobby had been taken to surgery, Kathy for the same angio procedure she had undergone 24 hours earlier. Bobby’s brain swelling had reached the point where they had to remove a portion of his skull to relieve the pressure. Josephina, his doting mother, is as stoical as a person can get confronting her god’s hard will. She told me she had shed every tear she had. I envy her fortitude. Hours later, within 15 minutes of each other, both Kathy and Bobby were wheeled back into their rooms, both with reports of complete success. Falling in a new friend’s embrace, now there’s something to hold on to. Some friendships take years, even decades to warm to maturity. Some just days.

Some of you have asked through these posts and emails, what’s up with February 11? Chris Thile (whose first solo album, coincidentally, was titled Not All Who Wander Are Lost, from the moving Tolkien poem Vicki Blond quoted in reply to yesterday’s post…thank you Vicki).

Which brings to mind a Kathy attribute that sometimes mystifies me. Chris Thile heads up a band I really like, a kind of alt bluegrass band called Punch Brothers. Kathy never tuned in much when I listened to their music, but went along with it anyway when I suggested we head up to Santa Cruz for a Punch Brothers concert. I felt that maybe she wasn’t really gung ho on the idea, but she would never tell me if that were the case, never want me to feel that I was prodding her to do something she’d as soon not. So we went. After the concert she said it was one of the best shows she’d ever been to.

So…was she humoring me, or did she really feel that? To me, the answer is it really doesn’t matter. Likely both. It could be that it truly was great for her because she knew it was great for me. You know Kathy, you understand that. And also, maybe it was great for her because she is so open and engaged, through all her senses, to the wonder of whatever is in front of her, whatever she’s doing, wherever she is, whomever she’s talking to,  or whatever she’s listening to…so that, could be, the music really laid into her viscerally. I don’t know, it’s a mystery. But I’m okay not trying to get to the bottom of it, since I benefit either way (that’s just me). And she’d never let on anyway, whether through kindness or mischievousness. I do love that woman.

So, February 11, Chris Thile, Lobero Theater. Let me know. Cafeteria tab’s on us.

Day 11, morning

At first I thought yesterday was going to be scarier than other days. When I got to SICU 18 in the morning, 5 medical staff were hovered over her, busily doing stuff. Then I was told it was only (only?!) a scheduled CT. That kind of scare happens a lot, more to Josephine and others than to me. But you’re never prepared for it. Maybe Kathy, not me. The scan came back without any alarms. Awhile later Aine showed up, went through her PCT work, and just as she was finishing Dr. Tensor arrived. Another marginal set of vaso readings, a later phone conference with out-of-town Dr. Zauner, and another angio was planned, third day in a row.

The vaso spasm problems, as I think I said before, are in the two frontal lobes. A bit surprisingly, of the two, most concerning is the spasming in the left-side artery, not the right where the ruptured aneurism occurred. As Dr. Tensor explains, that’s because, for all her life, Kathy has lived with a very narrow passage in that artery, so any additional constriction is worrisome. And the passage there is so narrow (even in its normal state) that if the angio doesn’t do the job there’s not enough room to insert a balloon. So they need to be aggressive with the juice they inject (very, very slowly) directly into the vessel to make it relax and expand (it’s called cardene, not condene as I mistakenly said before – bet that made some nurses wince). Kathy responds well to it, but even so the calming effects only last a day or two. That’s why I’m fine with their doing the angio daily. And yesterday’s went beautifully (was “tolerated well”), just as the previous two did.

Dr. Tensor also told me yesterday afternoon that all else was proceeding without surprises, and – real good news – no sign of pulmonary distress (aka pneumonia).

Drs. Tensor and Zauner confer every day on approach, even though Dr. Zauner is on vacation (he returns today). Actually, I suspect he’s been in South Carolina at a medical convention. Our daughter Abby, who works as a histology technician at a UCSF brain research lab (headed up by a Nobel Prize winner, yes, I’m a proud dad), says that’s likely where he is. I’m glad they do confer, because Dr. Tensor has had a long week covering (I think I mentioned he was awakened twice Tuesday night to come in to attend to Kathy…and he has other SICU patients, like Bobby, whose needs are just as demanding).

I wish Kathy could meet her doctors. She’s a passionate doctor advocate; having worked hand-in-hand with them for over 20 years she speaks from experience. She has strong opinions about a few pet subjects and will espouse them unflinchingly in the face of opposition. She’ll smile, of course – she’s Kathy, so she can’t do otherwise, even if a stern countenance would help advance her position – and listen attentively before responding. For example, feels strongly about some things political, about her labor union, and, like all her co-workers, about the primacy of patient care over any other aim of the healthcare industry (there’s really only one, you can probably guess what).

And about the dignity and dedication of doctors. I see it every day at Cottage: doctors working with their patients, discussing approaches with their staff and with other doctors in person and on the phone, intently analyzing the data streaming across their computer monitors, taking and reading notes. I never see them just relaxing.

Dr. Tensor, roused out of sleep twice in the night to care for Kathy, performs brain surgery on her the next afternoon. To me, that’s amazing. Kathy, however appreciative she would (and will) be, might not be too surprised. Her antennae are way more sensitive than mine when it comes to knowing how to recognize and honor dignity.  Just being close to her helps me see. For that, and a thousand other reasons, I really need her to come back.

Day 12, morning

Yesterday was another day on the coma trail with no end date in sight. The Doppler readings were marginally better than the day before, and there were a few hours of wait-and-see before it was determined to do another angio rather than give Kathy a day’s respite. I say go for it, even though it’s apparently a disturbance to her healing mindrest. For one thing, I try not to wake Kathy up in the morning when she wants to sleep in, but like a child I can’t wait for her, so I do. So I’m kind of used to it, even if she’s not.  (yes, it’s all about me). But the overriding concern here is that 1) Kathy is strong, and she’s been “tolerating” this procedure well the past three days and 2) giving the spasms another day to squeeze those vessels doesn’t work for me. So, into the “special ops” room they went.

The procedure takes about 2 ½ – 4 hours. So I took the time to visit the Cottage Hospital Rehab Center, which is truly the top rehab facility on California’s central coast for stroke. One way or another, I’m determined that’s where we’ll go when Kathy gets her discharge papers. I’ll get a better tour of the facility another day, hopefully next week. Meanwhile, here’s one thing I like about it.

I’m staying at a motel across the street from Cottage Hospital. We’re in a quiet part of Santa Barbara, tucked in somewhere between mall-heavy uptown and the city-sanctioned, tile-roofed fantasy Spanish AdobeLand of downtown. The walk to the rehab facility is about four blocks. I truly love this neighborhood. It’s anchored by Cottage Hospital and another large medical facility, Sansum Clinic. Surrounding them is a lovely residential neighborhood inhabited by a mixed bag of elderly retired folks, service workers, and families, mostly Mexican American from what I can tell. Modest turn-of-the-century adobe and wood-sided bungalows, some rental apartments of a more recent vintage. Yards proudly maintained. Very little traffic.  Oak trees, magnolias, Monterey pines. Bougainvillea, agapanthus in profusion (although I expect those to diminish fast, as we’re at day two of a weeklong heat wave).  

Pedestrians that you encounter look you in the eye, smile and nod. Mostly local residents going about their day. Some healthcare workers going to and from work at one of the medical facilities. Some are hospital visitors strolling the neighborhood, waiting for news of their loved ones. Soft background sounds coming from homes and passing cars are mostly children playing and música norteña. The atmosphere of simplicity and humane warmth here is very like what prevails at Cottage, and I suspect that the air of caring deeply about life has somehow drifted from the hospital to its environs. It’s like a mild contagion of wellness and fellowship. I would be proud to live here.

Last Friday evening, afraid for Kathy and my future, I was walking the streets and came across a modest church just blocks from where I’m staying. I’m not sure what denomination, don’t really need to know. Kathy and I aren’t churchgoers. The doors were open, services were being held, in Spanish, and I sat on the steps outside, listening without comprehending, slumped and building fear. After a short time a man came outside and invited me in. I declined, he blessed me and gave me a bottle of water, and went back in. After a few minutes I calmed down and kept on walking. Last night, another Friday, I was there again while service was on. The whole congregation prayed for Kathy. New tears, I don’t know what to call them. Several evenings since that first Friday, usually when there’s no service, I’ve returned to sit on those steps. It’s very restorative.

During Kathy’s rehab I know one place we’ll be going for her physical therapy, whether by wheelchair, crutches, walker, strolling hand-in-hand or arm-in-arm. I’ll just say come on, Kathy, and off we’ll go. We’ll sit on those steps in the evening, watch the world go by, nod and smile at passersby, and count our blessings. That place has been very healing for me, and I know it will be for Kathy too.

Day 13, morning

Friday night was hard. The nurse on duty kept giving me scary signals…not on purpose, but it seems like she used the word “critical” every third sentence. I don’t know, looking at the five or six numbers and graphs that are most carefully monitored, and attended to when they veer out of acceptable range, they seemed basically unchanged from the previous four nights that the spasming has been taking place. Maybe that night’s on duty nurse’s way of being forthright is just different from the other nurses’.

Aine is back on Doppler duty. Readings much like the previous days’ readings. I don’t know how Kathy does it. Four days of angio in a row – into her thigh, up her leg, up her torso, through her heart, up her neck, into the complex arterial network of her brain to inject the stroke-preventing cardene. Three hours plus. Drs. Zauner and Tensor are reluctant to keep pressing these on her because, despite the fact that she “tolerates” them “well,” they nevertheless take a heavy toll. So, yesterday, a one-day reprieve…no angio, to give her body and mind some hours to recover before the good doctors charge, catheter in hand, once more into the tightening breach.

But today, a very exceptionally delicate angio. Dr. Zauner is going to try to sneak his catheter into a 1 ½ mm vessel and lay down the cardene directly – it’s too small to do an angioplasty (which they normally do in this circumstance). He gives it a 20-30% shot of succeeding with that, otherwise he injects the cardene at the entrance to the spasm, lets the bloodstream carry the meds, and hopes for the best. It’s worked before on Kathy, but only for a brief period…we’re looking for something with better duration.

Overall, hopefulness! Here something else I can interpret as positive (whether the medical staff does or not):

First, the CT scan as of yesterday showed “no new stroke.” That means the cardene being injected into the spasming vessels has been doing its job. My mother, a nurse through the 50’s into the 80’s, praised the miracle of modern medicine. If she only knew.

Second, one of the two tubes draining blood from either side of Kathy’s head might be removed. A week ago they were using just one, but it was so full of blood they worried about clotting, so they added #2 just in case. Now they might not need that; tube # 1 functioning properly.

News like that makes me fantasize about rehab – if only can get there we’ll be good. Come on, Kathy.

So, with that rehab in mind, there’s something that has been troubling me. I have to apologize for a neglect that Kathy would (will) find hard to forgive – not replying promptly and individually to each of your loving and prayerful posts, your many voice mails and texts. I’ve not answered most of the phone calls as they have come in…I know from having tried that I invariably choke up, and eventually have to end the call before all can be said. Also, I’m on 24-hour alert (self imposed) for calls from the medical team. Please know that my neglect is not from anything other than my weakness and anxiety.

The posts have been so beautiful. Heartwarming. Therapeutic. Both to me and, I feel certain, to Kathy. If she were aware that I haven’t responded immediately to them she would be very disappointed. She might give me what has become known as “the look” (did I describe that earlier? It’s a kind of reluctantly affectionate staredown that a slightly exasperated, loving mother gives to her misbehaving, or mistake-prone child. Abby and Paige are well acquainted with “the look.” Me too).

What I want to do is this: make our replies a loving, mutual rehabilitation project, one that will be rewarding to both of us in re-living the reading and the whispering of those healing, encouraging messages, and in reestablishing Kathy’s, and my, re-connection with friends and family after the traumatic past few weeks. Can it have been only that long?

For now, though, I can only be in awe of the generous spirit of love pouring into our lives. Simply, thank you.

Day 14, morning

 Today I’m compelled to say something about prayer. Until this episode of Kathy’s and my life, I knew little about it. Now, I’ve been humbled.

 First, about Kathy’s current condition. Sunday started very iffy. Kathy had gone almost two full days without an injection of sweet cardene, the medication that relaxes and expands, into her brain’s spasming vessels. At mid-day she was taken to Special Procedures for another angio, 5^th in the past 6 days. Dr. Zauner told me beforehand that he would try to maneuver his catheter into a region just above the miniscule vessel that has been most worrisome, for its potential to close up and cause further stroke. He put the likelihood of this succeeding at 20-30 percent.  In the end, he did succeed, and in fact was able to perform an angioplasty (place a balloon) in that section of artery, which (as I understand it) opens up that slightly spasming vessel so that more blood (nutrients) can pass through the tiny narrow vessel beyond it. And into that tiny vessel, he injected more cardene.

 Dr. Zauner called it a very successful procedure, and one that may “possibly” prevent further stroke. (The worrisome narrow vessel that appears to be most threatening feeds an area of the brain that controls the right leg).

 Hours later, all signs were looking good. Into the night, her ICPs (Intracranial Pressure) kept edging back up into uncomfortable territory, but (with three calls to Dr. Zauner) the nurse got direction to make adjustments to which Kathy was able to respond. In all, I’m more hopeful now than I have been since the spasms started almost a week ago.

  Also, the Sunday morning CT scan showed no further stroke…there is no describing my relief when those scans come back empty of news.

 So, prayer. I’m a novice. But over the past two weeks I’ve been treated to a crash course. Words of prayer for Kathy has flowed from so many of you, friends and relatives with grounding in diverse spiritual disciplines: Catholic, Protestant, Buddhist, Jewish, Islamic, AA, Yogic, Deist, non-denominational, and others whose supplication on her behalf I don’t know.

 Does Kathy believe in the power of prayer? I know she does. Two years ago, when she had a hip replacement, she was heartened by the promises of prayers from pretty much all of the above, believing, she said, that they all counted, and all gave her mental and spiritual support going into surgery. Although she has strayed from her Catholic upbringing, in our travels she can’t pass a Catholic church or cathedral without going in and lighting prayer candles for friends, or family, or friends of friends, whom she knows to be in distress, with the hope (belief?) that they will contribute to a saint’s intervention.  A few years ago, wanting, I believe, to understand in a real-world, kind of scientific way, why she felt so strongly about the healing power of thoughts and feelings (prayer) to exert real influence, she urged me to read a book that made an extraordinary impression on her, “The Biology of Belief: Unleashing the Power of Consciousness, Matter and Miracles” by Bruce Lipton. I haven’t read the book (I read almost exclusively fiction – as my friend Roy once put it, just because it’s fabricated doesn’t mean it’s not true). Kathy used the thesis of the book to support her belief in the power of prayer to heal.

 And here’s something else, which I think is related. Through her hospital work, with fellow nurses, hospital staff, doctors, and patients and patient families, Kathy comes into intimate daily contact with far more people than I do. With sincere feeling and concern she sometimes tells me stories of hardships they are facing, bringing me into the fold of her compassion in a way that makes me well up with hope for their healing. (Lust listening to her lovely voice can put me in a trance. Take away all her other beautiful qualities and I would have been lulled into love by her voice alone).

 Yesterday I was visited by a great team of supporters – my niece Anna and her two small but powerful swimmers and splashers and smilers and laughers and huggers, Waylon and Avalon. There is nothing in my experience as uplifting as children at play. And our friends David and Lisa, Gail and Mike, and Finney and Stacey. Dana, I am so sorry I missed you Saturday. Their presence worked wonders on me.

 And most astonishing, most unbelievably crazy and breathtaking: Himalayan Prayer Flags! Dozens of them. Many dozens of them. Wildly colorful squares and rectangles of cloth, that Stacy put at the nurses’ station at Sierra Vista Hospital, where Kathy works, with an invitation to create a prayer for Kathy. Within days, so many (60? 80? more to come) were picked up by nurses, staff, and doctors, and came back with such incredibly beautiful drawings, prayers, poems, and personal notes of love that, again, I am at a loss what to call my new tears.

 Kathy, I feel we’re closing in here. Come on, just a little while longer.

Day 15, morning

 Other than to report that, as of 6:00 am this morning Kathy spent another manageable night, and that I anxiously await today’s TCP readings, I have asked my loving and loveable niece Anna if she would care to write a post. Here is her beautiful, tender, and humbling reply:

Dearest Kathy Blog fans, this is Anna, Kathy’s niece, writing a guest post.  Do not fear!  Kathy is doing well.  Uncle Dick (Richard to most of you, and the brother of my late father, Fred) asked me to write my thoughts following a lovely visit in Santa Barbara this weekend.  I was surprised, but willing to do anything that might bring Dick a smile, an ounce of peace, or a moment of respite. I also thought that this would be a chance to provide information that I know so many of you are craving.  An update not just of our beautiful, powerful, angelic Kathy, but also the man who cares for her endlessly, whom so many of you are worried about.

 Many of you, like me, wait each morning to get the notification that Dick has posted another beautiful update to the blog.  We blog devotees drop whatever we are doing to read his powerful words, and we feel warmer and closer to both Kathy and Dick each day.  We may cry or cringe, but always feel the dazzling power of their love.  It is Dick’s unbelievable writing that intimidates me now, but I will do my best to provide you a different perspective about the bubble that exists in Santa Barbara, protecting our dear Kathy.

 I first visited Kathy last Sunday.  It was 7 days after her stroke, and I travelled to Santa Barbara with no other purpose than to give Dick a hug.  What I received was an incredibly powerful sense of peace.  A little background is needed.  Dick and Kathy for me have always been providers of celebration and escape.  When I was little, getting to visit Dick, Kathy, and “the twins” was a treat. Kathy was always fabulous—pointing out delightful things in nature, or offering her amazing baked goods.  A visit to their home was always a little bit magical.  Once Dick & Kathy moved to the Central Coast, soon followed by my grandparents, visits usually meant larger family weekends—always with great food, laughs, and fun.  Then while I was at UCSB, Kathy and Dick would allow me to escape to their house for term paper writing marathons, and finals cramming sessions.  My work always improved under their care.  Again, magical.  In recent years visits have included my children, who think Dick and Kathy are beyond fabulous.   They are so warm and loving with the kids, no one seems to want the visits to end.  My kids also feel the magic.

 I write all of this to help you understand my mixed emotions when I visited last week.  Dick and Kathy represent security, love, support, and warmth.  Yet one lay in an ICU bed with the other standing vigil.  The world seemed so topsy turvy.  And then I walked into SICU Room 18, and I was at peace.  Through the dozens of tubes, 8 monitors (at least) and the subtle hum of what seem like millions of machines, Kathy was still able to exude peace.  Always a little bit magical.

 After receiving good news from the doctor last week, Dick visibly relaxed a great deal during the course of our visit, and his smile and laughter seemed genuine. This week (Sunday morning), I arrived with my kids to learn that Kathy had had a bad night.  The nurses would not allow Dick to visit her that morning, and he was obviously shaken.   His positive nature was being pushed to its limit.  Luckily there were many friends there to distract him—especially after Kathy was wheeled into a very important surgery.  One of the worst parts of Kathy’s ordeal seems to be the waiting.  Waiting with Dick, and having a glimpse into the strain he deals with every day, is difficult to bear.  I am worried that the waiting is taking its toll.  However, the reward for his patience was the news that the surgery went extraordinarily well.  The collective sense of relief and joy was palpable—especially from Dick.

 A little more about Dick. It is obvious when you are with him that Kathy is ever-present in his thoughts.  Sometimes he is distracted, and clearly feels the need to see her.  He walks the two (lovely and peaceful) blocks for a visit, and returns much more at ease.  Don’t worry, he eats regularly, and it is always healthy, but he tells me that he is not sleeping well.  Obviously, his sleep is much better when there is good news about Kathy.  Everything is about her—at every moment.  And that seems to be a good thing for now.

 Back to Kathy… As Dick always posts, there is nothing “usual” in the SICU.  For that reason, families rely on every cue from the medical team—intentional or not—to understand a patient’s status.  Today we had two wonderful, unintentional messages.  First, during breakfast in the cafeteria (yes, it really is very nice), Dick slipped away for a visit.  He returned after just a few minutes.  Last night had been difficult for Kathy, but when he approached the room there were 5 people attending to her.  They all turned to look at him…and SMILED!  Kathy was doing well, and her medical team was happy.  Joy!

 The second “message” was during lunch (yes, back at the cafeteria, which my kids love as much as Dick).  I snuck upstairs for my own visit with Kathy.  I was struck by the change in her appearance.  Last week she appeared to be peacefully sleeping.  This week she looked like a tired warrior at the end of a battle, but one that is on her way to victory.  There is no doubt that Kathy’s beautiful body and mind are fighting hard, hand-in-hand with a medical team that is more vigilant than any I have ever seen. When I arrived today, the primary nurse attending to Kathy went to lunch.  She left the room, and the relieving nurse did not come into the room for several minutes.  Having been in SICU last week, I realized this was monumental.  The nurses were always, ALWAYS, by Kathy’s side, or leaning in the doorway reading her monitors.  They do not step away, not even for a moment.  Until today.  Hooray!  Another unintentional sign that Kathy the Warrior is moving closer to victory.  Our girl is working her magic.  I feel it.  I know it.  She is winning the battle, and will soon win the war.

 Come on, Kathy!

Day 16, morning

I’m sorry to say that there will only be an abbreviated report today on Kathy’s condition. Unfortunately, her progress was not as good as we’d anticipated. Late yesterday afternoon, after an anxious day of stat- this and stat-that, and then deliberation with Dr. Zauner on directions that were still open to us, with other options closed or closing fast,  we decided on a surgical operation called a decompressive craniectomy.  You can read about it by clicking here. The surgery went as expected… the critical part is how Kathy will be able to respond to it. I expect a full day today of CT scan, Doppler reading/studies, adjusting meds to find optimal balances, monitoring Kathy’s systems, etc. If there is to be a positive outcome, according to Dr. Zauner it could be a very positive outcome. But no guarantees, of course – there are other outcomes.

Now is a time when your hopes and prayers are sorely needed. Thank you for all of them.

And thank you, Anna, for offering such a beautiful and heartfelt post yesterday. I look forward to reading it to Kathy when she is healthy enough to shed tears.

I hope to be able to report good news soon.

Come on, come on, come on.  Walking to and from Cottage, all night long in my fitful rest, those words just keep pounding. Come on Kathy, we can do this.

Day 17, morning

I am afraid that today’s update, like yesterday’s, will need to be brief. While Kathy’s surgery yesterday helped relieve her intracranial pressure, unfortunately the vaso spasms have not subsided. And, because she has been on a ventilator for over 15 days, due to the considerable complications of continuing on that course it’s been decided to proceed with a tracheostomy. That surgery, we expect, will be scheduled for Friday.

She is resting comfortably.

Abby and Paige are coming to Santa Barbara tonight so that they, Kathy and I can be together during this difficult time. We will meet with Dr. Zauner about options, outcomes, and courses of action, hopefully on Friday.

Until we can confer with Dr. Zauner the medical team doesn’t anticipate any significant changes in Kathy’s condition or the course of her treatment. Until there are new developments I might forego posting updates on this blog, focusing instead on our family needs.

Thank you again for your loving support. Abby, Paige and I, along with our beautiful Kathy resting at our side, will be grateful for your continued prayers.

Day 18, morning

Had to share this quick update:

Abby and Paige, and Abby’s guy Prescott, arrived just in time last night for us to share fireworks with Kathy, a wonderful throwback to almost four decades of family fourths…one of which was right here in Santa Barbara when we used to camp at El Capitan State Beach.

Of course we couldn’t witness the actual display, but we knew they were happening somewhere, and the hushed, semi-darkened room we shared with Kathy was even reminiscent of the several fog-shrouded fireworks we’ve enjoyed in Morro Bay.

It’s an incredible relief having our girls by my side, and a beautiful sight to see them at Kathy’s bedside.

Hopefulness! Yesterday’s ultrasound provided a ray of hope that the persistent vaso spasms might have peaked and begun to weaken. If this morning’s ultrasound confirms that they are on their way out, and she shows no signs of increased intracranial pressure, we’re hopeful that Dr. Zauner will decide to begin to try to pull her out of her coma by slowly reducing her paralytic and sedative medications, an arduous process of drug withdrawal. All of us (with the possible exception of Kathy herself) are anxious for Kathy to take that next step.  Today’s replacing of the ventilator with a tracheotomy tube will make her a whole lot more comfortable.  

With so many prayers and Come on Kathys cheering her on, she’s going to make it. Thank you again and again from all of us for your overwhelming love and support.

Day 19, morning

Still another day of hopeful, then wait-and-see news. Kathy’s ultrasound readings yesterday showed more signs of abating, and we’re hopeful that will bode well for no new stroke in that affected area of her brain, and for an easing of the nagging persistence of her intracranial pressure, which continues to require medical intervention and now constitutes Kathy’s main impediment to recovery.  She struggled again last night with them, but the maximum dosage of manitol kept them under control. Kathy’s challenges keep rearing their ugly heads, and she keeps meeting them with her usual aplomb. I would be honored to know any person who could do battle on so many fronts, and for so long, and for such a worthy cause, with such mighty grace.

I do know two such people, two women of the strongest constitution, who have fought through a terrible war lasting many years, waging battle after battle against what is perhaps the most horrific scourge of our times in America. They won that war, and now are standing by Kathy’s and my side supporting us in this new encounter. I am humbled at the thought of what they have overcome.

Yesterday our longtime, close friend CT came by for a visit. CT’s lovely wife of many years passed away a few years ago after a prolonged battle with cancer. Before Mary got sick I told many people that she and Kathy could have been born twins in angelhood. I want CT’s fortitude in the face of life’s uncertainty. I don’t know that I’m capable.

But I will say this. If you find yourself in a place of distress and fear, and you need a helping hand, a ride, a prayer, a visit, hopeful words, or a testimonial from someone who has trudged along, eyes to the sidewalk and muttering to himself on a path from fear into faith – I would never have believed it of me, but it has happened – I could be your guy.

Naively, I thought Kathy and I had arrived. But there’s work ahead.

Abby and Paige: you are my inspiration.

Day 20, morning

Yesterday and last night were pretty much unchanged for Kathy. The ultrasound showed, we think definitively, that the vaso spasms have run their course…a giant relief. The problem now is that the intracranial pressure (ICP) remains too high and, although she is responding to the medications they apply to control it, the dosages are at the highest levels possible without causing other damage, and the duration of their effectiveness seems to be lessening. The ICPs, like the vaso spasms, almost always have a window of time to run their course, and we are hopeful that Kathy’s is ICPs are nearing their end. All other systems (pulmonary, liver and kidney function, circulatory, others) have remained good throughout Kathy’s stay here. When the ICPs have diminished to a safe level Dr. Zauner, we believe, will tell us it’s time to pull back on the paralytics, then on the sedatives and – wake her up!

Kathy and I have several routines. Here’s one. On days when Kathy works, she usually returns home sometime shortly before 8 pm. I’ll usually be reading something, and around 7:30 I’ll start getting this glowing sensation of expectancy: I listen for the wonderful rumble of the garage door opening. When I hear it I jump up, go to the door at the top of the stairs Kathy comes up from the garage. I listen for her footsteps, then try to open the door just as she reaches the last step. She comes in, puts down whatever she’s carrying, and I wrap my arms around her, give her three big bear hugs starting at her waist and working upward, then give her a squeeze on her lovely tush. Then we pour two glasses of wine and talk about our day.

I can’t wait to get that glowing sensation back. When Dr. Zauner gives the word, it will be something like hearing the rumble of the garage door.

Your prayers are truly sustaining.

Day 21, morning

Three weeks in, and another day of careful management of Kathy’s swollen brain. Aine, who has done most of the ultrasound checks, tells me we’ve likely seen the last of the ultrasounds, as Kathy’s vaso spasms have left the room. CT scans likely won’t be performed for awhile, I’m told, because they are an extra stimulus that won’t really tell us anything at this point that a (hopeful) decrease in Kathy’s need for the regular course of alternating Mannitol and 3% saline. Meanwhile, we stare at the monitors hoping for a change.

Here’s something about Kathy that I’ll bet nobody knows but me: she hoards candles. Hoard is probably the wrong word, but she buys them like they’re the only thing that will save us in case of a natural disaster and she can sense a monsoon coming. I’ve found them in unlikely spots all over the house. I tried to consolidate them into one cabinet, and kind of succeeded. Then new ones started showing up in all their former hideouts. She won’t tell me why she likes having so many.

She will be touched beyond belief at yesterday’s Mission candle ceremony, and just as surely by the nurses’ station candle ceremony. As I’ve said, Kathy is a great believer in the healing power of lighted candles coupled with prayer. Thank you Susie for alerting me to the ceremony, and, with Gail, for sending photos. They made me smile through tears.

Abby, Paige and I held our own prayer circle at exactly 2:00 pm yesterday to contribute our energies and to feel the love coming from our friends in San Luis, and from all the others who have been sending their blessings literally from around the world.

Our friend Kevin tells me there was a ceremony at another house of worship. And our friend Allen arranged yet another at our special non-denominational, daily gathering place, Legends, our Cheers-like pub in Morro Bay.

Kathy will have to be well into her recovery to withstand the rush of emotion she will experience learning of all those ceremonies and looking at those photos.

She and I once neglected to douse the candles of a jack-o-lantern. In the morning the sad, collapsed creature had wax tears.

Day 22, morning

I spoke with Dr. Zauner last night at some length. Not so much about the medical details of Kathy’s condition – I pretty much get more than I can absorb when I eavesdrop on his rounds – but more about why Kathy is here. And he says it’s because he has real hope for her. And he’s not someone to mince words…he really does see a positive pathway for Kathy, and has a plan to make it open up for her.

In fact, the past 36 hours have shown a glimmer of that hope. For Dr. Zauner that glimmer is made up of a complex of data patterns that he analyzes over real time via multiple computer programs and radiology scans. I can only see it narrowly.

Here’s the main key that Paige and Abby and I use. There’s a numeric range, basically from 15 to 30 for our purposes over the past weeks. It’s the ICP number, and it relates to the state of Kathy’s brain swelling, which is the big bad wolf for us right now. ICP’s for undamaged brains (depending on whom you’re talking to) range from 5 to 15.  Dr. Zauner’s stated goal for Kathy is to keep hers at under 25, and the medical team has a dozen or more complex strategies, some very precarious and difficult, some more routine, to help meet that goal. All are beyond my understanding, both as to what they are, what they’re specifically meant to accomplish, and why/when they get applied. Abby and Paige and I don’t have a clue (well, maybe Abby, some, because she does neuro lab work, but this is different). The team is constantly tweaking things in the effort to control that number (i.e., the swelling), but nevertheless Kathy sometimes shoots up to 30+. Last week they had to increase Kathy’s dosage of the Mannitol and the 3% saline (the two main meds) to their maximum dosages and their maximum frequency. Beyond that, it’s just wait and hope. Wait for Kathy’s swelling to subside and hope she doesn’t succumb to the effects of her coma, the incredible application of numerous industrial strength drugs over three weeks and counting, her immobility, pneumonia, infection, and many other dangers.  After her Mannitol fix, her number will creep down for awhile, then start climbing again. When it pushes 30 she can get a 3% saline bolus, which helps the number move downward for a bit, hopefully staying under 30 until Kathy can have her next Mannitol fix.

Here’s what hanging out at SICU has been for us. Day after day after day, the three of us quietly enter SICU 18 to whisper our love to Kathy, or stand outside the room peering through the window, eyes fixed on the ICP monitor.  We hang on every slight uptick (“ohhh, no!”) or each slight movement downward, say, from 23 to 18 (we love the teens: “she must be getting better!”). After a good downtick we often just hightail it real quick so as not to have to witness and acknowledge the next movement, which might undercut our exultant moment of giddiness.  Then, down at the cafeteria or back at the motel, we’ll apply our analysis to what happened, and what it foretells. We know next to nothing about the medical tweaking that caused the slight change, but that doesn’t stop us from explaining to each other’s eager ears, in elaborate “scientific” terms, what the downtick means.

But then late last night: an 8! A somewhat artificially derived 8, I was told, but what a joyful moment to see that number. And she went all last night handling the extended Mannitol frequency (from 4 hours to six hours), staying for the most part in the high teens and low 20’s. That’s what Dr. Zauner told me last night he was hopeful of seeing today. If so, and all other systems look okay, he’ll order the tracheotomy they had to cancel last week because Kathy’s condition was too precarious.

So…signs of progress. And hopefulness. Big day ahead!

Kathy, keep it up, just keep it up a bit longer…come on, come on, come on…

Day 23, morning

Kathy had a somewhat problematic day yesterday, mainly, again, with her ICPs. Late afternoon stat CT scan showed no change from the previous day, so we took that as a plus, given the up-and-down day. Then she settled down again last night. The tracheotomy was postponed until today for scheduling reasons, and to provide one more day of monitoring Kathy to see if she will tolerate the procedure. We’re very anxious to get this one behind us.

Yesterday and today we have guests – two stroke veterans. I’ve mentioned Kevin before. He and his lovely mate Candy stopped by early in Kathy’s stay here. It’s because of Kevin and Candy that I will go to every length to get Kathy’s rehab in the Cottage system here in Santa Barbara. Kevin’s treatment here was instrumental in pulling him through his stroke to a place no one who doesn’t know him would suspect a previous health problem, for which we are all extremely grateful – even for the return of his gift of gab.

Allen has a healthcare history beyond belief. Two Viet Nam tours on a navy river boat, about as dangerous duty as you could do in that war.  PTSD. Two open heart surgeries. Multiple TIA’s.  Three strokes. A long story of coldhearted pushback from the VA.  Allen had a reputation, well-earned, as the quickest wit in town, never at a loss for the inspired comeback. Then his last stroke primarily affected his speech, fate’s way, I suppose, of showing us just how punishing life can be. Has it affected his real self? Many would say that Allen’s wit is his defining quality. Kathy says no, it’s the purity of his heart. She sees into him clearer that anyone I know.

Much as I’d love to, I rarely get a chance to brag about Kathy’s nursing talents and experiences. I’m welcome at the nurses’ stations, and I do get to hear Kathy’s reports on co-worker gossip (don’t worry nurses, I’ll try to ignore the the skeletons in the closet here – but be aware, I do know all about them),  and I hear tons of testimonials from mothers we’ve run into around SLO county whose children Kathy welcomed into this world at their birth.  But I don’t get the opportunity to go into the Labor & Delivery or Mother Baby rooms to observe firsthand how and what she does. Plus there’s HIPPA.

Once in awhile, though, I get a glimpse. Here’s one.

Early one morning Kathy answered our phone. All she heard was hesitant vowels and consonants. Then she said, “Allen…is this you?” After more hesitation, the word “yes.” We hurried over to Allen’s place to assess. Although he passed a few quick tests for stroke that Kathy performed, we quickly hurried him off to the ER. Once in the parking lot, Allen – a man with a mind of his own – stood firm that he wasn’t going in. He’d had too much of hospitals and was adamant about not going in again, fearful of another long stay. No way was he going back in. Rather die. So Kathy played her trump card. She said “Allen, we love you. I know you love us. I’m a nurse. If you don’t come in here with us this minute, I could lose my job.” Without another moment’s hesitation Allen said “let’s go in.” I don’t recall ever having heard that peremptory tone of voice in Kathy. Sometimes I guess nurses have to twist arms.

I am so proud of her in so many ways.

Day 24, morning

Today’s news about Kathy’s current condition will follow a few short comments about her face. Kathy has the most beautiful face I have ever seen. I first saw her 37 years ago at a party. As a friend and I were watching her from across the room, he said “That woman’s smile is like sunshine.” Over the years I’ve heard that same comparison made many times. To me, her smile does shine like sunbeams, and it also carries their warmth.  One of my main callings in life is to keep her smiling, so those times when she’s not smiling, and I don’t know what else to do, I just beg her to please smile. And sometimes that perturbs her, but I can’t help myself. Like when she’s brushing her teeth, for example (and then, if I keep at it, just to get me to stop she’ll actually smile, which is pretty funny.  But it makes me happy).

Sometimes in the morning, while she’s still asleep, I get to gaze upon her face without her knowing, which is a real nice way for me to start the day. And it’s very much like what I can do now, because:

They successfully performed Kathy’s tracheotomy, freeing up her lovely face from the ventilator mask apparatus that she has worn for the past three weeks.

So, okay, now for some outstanding news. There’s been quite a turnaround the past 36 hours:

• Vaso spasms have been pronounced officially over
• ICPs are under control – for the past 36 hours, nothing but improvement. Numbers never reaching 20, even with reduction in Mannitol from 100% to 80% and extended time of application from 4 hours to 6 hours. Plus, no further need for the 3% bolus. So, bottom line, brain swelling shows every sign of being under management
• A PICC line was successfully inserted yesterday with no objectionable responses from Kathy
• Tracheotomy successfully performed
• Oxygen monitor tube in her cranium removed – no longer needed
• First steps toward weaning Kathy off the sedatives and paralytics that have induced her coma – as of 7:00 am this morning the first of her sedatives to go, Propofol, has been retired

Kathy’s medical team – as skillful a bunch of professionals as you could hope for – has begun the first, albeit very tentative, steps toward waking her up. Kathy has always loved to sleep in, but this will be a marathon wake-up session. Having been deeply sedated for over three weeks, the projected timeline for her to gain consciousness is that again, and maybe more. It will be an ordeal unlike any she’s ever had to confront. But the first major hurdle toward recovery – clinging to life – appears to be well within reach.

Kathy’s strength of character, her love of life and will to live, her healthy habits, the good fortune of having recently built heliports at Sierra Vista and Cottage Hospital, the miracle of modern medicine, all have contributed mightily to this hopeful turn of events. And most of all, I am convinced, what has brought her through these perilous weeks has been the support of family, friendship, prayer, and the powerful energy of belief.

Thank you for your incredible wealth of support through this difficult ordeal. I could write a book of thank you’s and it would not be nearly enough. Your support has meant volumes.

And can’t you just wait to see her face again?

Hi everyone, this is Abby & Paige. Our Dad invited us to write today’s blog!

Richard and Kathy, a love story for the ages. For better or for worse, in sickness and in health. Well, let me say, in health is the easy part. In sickness is where one’s true colors show, and Richard’s true colors are shining very brightly indeed! I have often thought how lucky we are to have Richard as a husband and father, but today I am positive that we are the luckiest people alive!! He is a pillar of strength, courage, and endurance at a time when it couldn’t be needed more. I always thought of my mom as the rock of this family, but my thinking has changed! They are equally strong and we will need all of their strength combined in the months ahead. If there is a primary lesson to be learned from this experience, it has to be keep your loved ones close. Don’t drift apart. Never miss a chance to tell them how much you love them. Also, take a good look at your partner and ask yourself, is this person going to care for me and love me unconditionally when it counts? If not, to quote Kathy, “move on, there are plenty of fish in the sea”. Good advice from someone who has certainly netted herself a winner. Paige and I used to tease our parents with hey, thanks alot for giving us unrealistic relationship goals, but in all seriousness, they have taught us what true love looks like and for that I am eternally grateful!
With that said, I can move on to Kathy updates. We had a tiny scare with news of an infection in the lungs caused by aspiration during the initial event. This can be cleared up with antibiotics and wasn’t unexpected. According to her nurse it is “common and not serious”.
She has been completely weaned from one of the sedatives with no ill effect and removal of the paralytic has begun, which she seems to be tolerating well.
Her IC pressure remains manageable even though they have not been draining the surrounding cerebral spinal fluid. The fluid should be there so constant draining of it would cause the pressure to be artificially low. There is no longer a constant need for this.
Paige and I will be heading home tomorrow and the good news is a great relief for us. We know that Kathy and Richard will both be okay. We are hopeful and positive as ever as we wait patiently and repeat our new mantra….C’MON KATHY!! Or in our case C’MON MOM!!

These past few weeks have been the hardest weeks of our lives, and Abby and I are no strangers to rough weeks. Through  all the fear, the worry, the ups and downs, the good news and the frightening news, the tears and the hope, the hugs and the prayers we have bonded. I feel that our beautiful little family has grown closer than ever. My Mom and my Dad and my Sister are the most wonderful people I know.

C”MON MOM!!!

Day 26

Thank you, my lovely daughters, for contributing so sweetly to this record for your mother to look back upon some day when she has the strength to cry for a long time. You have made me very proud, and have brought out an unaccustomed embarrassment in me for praise that I will enjoy trying to live up to.

I began writing this blog with the intention of keeping Kathy’s friends and family up to date on her progress through a passage in her life that promised to be the most life-changing she had ever come close to facing. Part of me must also have been thinking that it would serve for her eyes too, as a daily record of a lost period of time that her memory might have no chance of recollecting on its own.

I know that I have sometimes strayed from that original purpose, a digression brought on by my irrepressible affection for the woman I love. I’ve never thought I could be so maudlin. And, as many of you have rightly predicted, I’ve laid myself open to torrents of “the look.”

Kathy is now successfully emerging from her coma. And so, the period of Kathy’s long sleep having passed, this will be the last of my daily posts. Her progress from here to the end of her time at Cottage Hospital, I’m told, will be eventful, with bumps in the road just about every single day. But it should be less emotionally torturous than the nerve-wracking, life threatening highs and lows of the past three weeks. She will emerge intact, if not uninjured. I will be by her side every day here in Santa Barbara for as long as it takes to bring her back to our home in Morro Bay. There’s no way of knowing how long that might be…I’ve booked a room through the end of September. I’ll continue to post updates to this blog whenever a major turn of events occurs, and at least once a week for those who would like regular updates. For those of you who want to be made aware of when these updates occur, and have not signed up to track Kathy’s progress, you can be notified by email of the updates just by clicking on Kathy Oehler and then clicking on the “Follow” button at the lower right hand corner of the page.

The road ahead for Kathy, and for me and our family, and for that matter everyone who loves Kathy, looks to be a very steep one, with an uncertain destination.  We don’t know how long that road is, what perils she may encounter along the way, and – most worrisome – what awaits her at the end.

How will she tolerate what will surely be an excruciating ordeal of detoxification? We don’t know. How long will her recovery take, and what kinds of rehabilitation will she need? We don’t know that either. Mostly, however, what we don’t know is the type and extent of damage (“deficits,” to use the hospital term) her stroke will have inflicted. To find out, we wait. And wait. And wait. Without doubt, patience is the number one visitor virtue at Cottage.

I have told myself this, and I know it to be true: all I really need is for Kathy to emerge as Kathy. To be able to be herself: to be able to love, to be loved, and to smile. Those three things.

I’ve cried many tears for Kathy. I will cry more. I might be crying for her when I breathe my last breath.

In the past 25 days I have learned about the gut-wrenching experience of helplessness. That’s a hard lesson for someone facing a life-threatening event of the person who means everything. At some point, if you refuse to give up hope, you have to give yourself over to something else, acknowledge that there’s another power working through events.

It’s been a life-transforming time for me. How changed Kathy, or I, or the life we’re allotted together and with our loved ones will be after the events of the past weeks, of course there’s no way of knowing. But I do know I will be a more attentive person. Not that I will have to work hard to make an effort. It simply couldn’t be otherwise.

Kathy and I have counted our blessings every step along our way. We’ve spoken the words of love just about every day for going on four decades, and have had many extended conversations on the subject of our good fortune in having found each other, on having been allowed to live a life we’ve chosen, having lucked into the children we are blessed with, and having been given special knowledge through our family and friends.

But it’s more than all that, and something much less. A future blessing that I hope for, and hope to be given the opportunity to work toward, is simply to be able to sit side by side with her. That’s plenty. As I said before: to look out at the world as it passes by, maybe even from some welcoming steps…nod, smile, feel the warmth of our bodies pressed against each other. I now understand how awfully much that’s asking. How could anyone ask for more? Why would they?

Day 29

Kathy’s progression toward wakefulness has been slower to show movement than expected. All medical impediments have been removed, so it is now time for Kathy to begin that journey using her own mental and physical strength and stamina.

Her ICPs have returned to normal (with the continued assistance of the cranial flap now resting in her tummy), and so she is now completely off the Mannitol and the EVD line (the tube that drains fluid and allows measurement of the intracranial pressure) has been removed. That removal has triggered a change in her staffing, so that now she will share a nurse with one other patient. Her paralytic drug, her primary sedative drugs, and her step-down sedative drug have all been removed, although, because she was on such heavy dosages for so long, their dissipation from her system won’t be immediate.

So now we wait and hope. I visit her 10-12 times a day, gown up, glove up and mask up because she is still battling a lung infection which, I’m told, is being successfully controlled by antibiotics. I whisper my love to her, my special name for her, tell her the news and messages from her well-wishers, and urge her to respond in some small, purposeful way. She does open her eyes and mouth at times when she’s being oppressed in some way, for example by being turned over or being wheeled to radiology for a CT scan. But those reactions, I’m told, are just that – reactions, not responses. We need to see purposeful responses to know that she is cognitively aware of her surroundings. Over and over, I ask her to squeeze my hand, wiggle a toe, open her eyes, or just try to open her eyes so I might detect a flutter of her eyelids. But so far nothing.

I believe she is aware, and that she listens, and hears, but that she is too weak to intentionally respond. Also, she has never been in a hurry to wake up, and she really resists being stirred from her dreams. So I’m not surprised she’s taking her time now.

Over the years I’ve become well practiced at the art of watching Kathy’s sleeping eyes for signs of movement, so there’s a familiarity in what I do when I’m with her in SICU 18. I’m always anxious to talk to her, so I always look for an opportunity to rouse her from sleep without her thinking I’m being intrusive.   So If I’m up first in the morning I’ll shower, then come back into the room, and look at her eyes.  It’s a little game we play. I’ll start dressing, but always keeping one eye out for her eyes to open, telling me she’s awake. Sometimes she really is asleep, so I have to disappointingly go downstairs to start my day. But other times she only pretends to be sleeping, then, while I’m dressing, she’ll coyly open one eye just a tiny bit to see if I can catch her. Then I jump on the bed in triumph and kiss her on the cheek as much as she’ll let me. It makes her smile.

Last night, when the nurse on duty wasn’t looking, I removed my mask and sneaked a kiss. Then I walked back to the motel with tears in my eyes.

I’ll post again as soon as we hear from Kathy. Prayers and Come on Kathys are much needed at this hour.

Day 34, evening

Please forgive my failure to provide an update for the past week. For most of that time very little progress toward Kathy’s wakefulness was forthcoming, despite my over-zealous over-readings of the slightest indication of responsiveness from her, and my constant whisperings of love and encouragement. No signs of advancement during this phase of Kathy’s tenure at Cottage was discouraging. Indications from Kathy’s team of caregivers produced no hint of improvement toward wakefulness and purposeful response to stimulus, and the message to me was that it might be time to summon family. Abby and Paige and Prescott, and Anna and family, all of whom you’ve met through earlier posts to this blog, have arrived, as well as Kathy’s sister Laurie and her husband Roland, fellow travelers and partiers with Kathy and me.

Yesterday morning, with Abby and Paige and me at Kathy’s bedside, Kathy opened her eyes (in itself not a true sign of progress), tracked me when I moved from her vision’s front to its side (a very real and significant sign of progress), yawned a world class yawn, then smiled when I asked her to smile, and then smiled again when I asked her to smile again (tremendously brain-intensive efforts that lifted my spirits to the heavens). Then, after producing such a prodigious effort, and I would go so far as to say miraculous effort, she lapsed again into sleep, encouragingly just like her old self. Most of the staff seemed dubious that she had actually performed any of those awe-inspiring feats.

Today we had a planned family meeting with Dr. Zauner, expecting a recommendation that had been signaled to us over the past week, that we prepare for a difficult decision. Hence the summoning of family.

Prior to our meeting Dr. Zauner performed an examination of Kathy’s condition. Then, at the meeting, introduced by a chaplain by the name of Clay, Dr. Zauner expressed to the gathered family that his examination indicated agreement with our observation that Kathy had indeed opened her eyes, and had indeed tracked me – that is, looked purposefully “at” me. He then described the complex mental gymnastics that go into such an act, not at all an act capable of being performed by a comatose person. Did he think, therefore, that there was valid reason to continue treatment in hopes of a recovery? When asked what he would do were it his loved one, he told us that, with Kathy’s condition, her age, her health history, and discounting religious beliefs and family disagreements (there are none here), and most tellingly considering her progress over the previous 30 hours, he would give it a bit more time to monitor and see what happens. What does he mean by a “bit” I asked. “Maybe a week,” he said.

Veterans of Cottage Hospital SICU recognize good news when we hear it.

Tonight, a celebration! Come on, Kathy!

Day 38

Once again I’ve been remiss in sharing information about Kathy’s status. In short, she is improving. Slowly, often uncertainly, often with emotion-crushing setbacks, but with a determination that only someone with Kathy’s immense reservoir of resolve could muster. I believe at last report she performed an act that, like no other in my life, sent ripples of thrill through my entire being – she smiled!

Since then, she has wiggled toes on her left foot, gently squeezed her left hand and raised her left forearm, nods for yes and shakes her head for no (“shakes” is too strong a word but we can see her intent), and sometimes attempts to mouth words.

In SICU good news doesn’t come free. A few nights ago Kathy contracted an ICU-type pneumonia, but one that, thanks to the ever vigilant team at Cottage, was identified and treated immediately. As of this morning the pulmonary doctor assured me she had pretty well knocked it out.

Big rounds happen Wednesday and Thursday mornings, so those are times I know that if I am there (and I never miss them) I’ll get the latest from the five or six doctors monitoring Kathy. It’s very hard knowing how and when to be at the hospital, both for catching the key medical team members (they’re always on the move) and for catching Kathy when she’s awake (she sleeps a lot, and I like to let her), or when she’s not being attended to by some aspect of her nursing care, or when she’s not being wheeled off for another of the seemingly endless procedure. (She was scheduled for one today – a percutaneous endoscopic gastrostomy, aka PEG, which would have removed the last of countless tubes from her head, revealing once again the fullness of her face’s radiant beauty. Unfortunately, because the cranial flap embedded in her tummy was in the way, that procedure was aborted. Just another relatively small obstacle on the bumpy road).

So, for the big news of the day. At this morning’s rounds, all the doctors and nurses agreed that Kathy’s vital signs have normalized or are on their way there, so very soon now she will be put on the ventilator weaning trial, and with luck she will be leaving SICU for the Cottage Hospital ICU step-down floor (a misnomer if there ever was one given the step up the ladder of recovery it will mean to me and, I’m sure, to all of Kathy’s well-wishers.)

I apologize again for the hiatus in reporting Kathy’s condition. As it turns out, after 38 days Kathy’s stamina under the most arduous circumstances I can imagine has outlasted my ability to endure simply watching her. I am exhausted, yet Kathy continues to look fresh as the morning Santa Barbara air.

Day 43

Except for an intervening bout with some alarming but not heart-stopping news, and one disappointment about next steps, the time since last report has proven really good. Kathy has graduated downward, to the first floor step-down unit. My badge for the next several days will say Ridley Tree instead of SICU. To get there, Kathy has had to struggle through several days of learning to breathe on her own. The ventilator has been retired, one of the top milestone goals since her arrival at Cottage. Soon – probably this Friday – her cranial flap will be returned to its former place atop her head where it belongs (requiring a brief return to SICU for a couple of nights’ observation, but with the great advantage that we might expect even more improvement in Kathy’s overall condition.) Following that, we expect the removal of the feeding tube in her nose and the insertion of a feeding tube through her tummy (where the flap has departed), and then the total removal of her trach collar, to be ceremoniously replaced by a bandaid, which I hope to provide myself courtesy of Rite-Aid. Meantime, maybe tomorrow, an adjustment will be made to the trach collar that will allow exhaled air to proceed from her lungs through the normal passageway, permitting her to cough naturally (hearing her strained cough now is an experience no single lifetime will allow me to forget). Mostly, though, it’s her mellifluous voice I need to hear.

Afterwards…and here’s the disappointment I mentioned earlier…instead of proceeding to the Cottage rehab facility as I’d hoped, I’m told that she will need some (indeterminate amount of) time at a “skilled nursing facility” (for those of my generation, that translates to nursing home). If I knew how long she will be in that type of facility I would know better how to plan where to look for a likely place, possibly either here in Santa Barbara (the better to place her in Cottage’s excellent rehab when the time comes), or somewhere in SLO County if it appears that she might need many months with skilled nursing. So, much is still up in the air. Again, the medical profession’s unyielding insistence on the practice of its abiding virtue: Patience.

Moving downstairs to Ridley Tree will be an uplifting but rueful step. A few months ago, Kathy and I took note of the fact that, in our 37 years together, we had been apart less than a month in total…on average, under one day a year. Now, we’ve slept in separate beds more in the past 40 days than in our entire time together. Kathy’s been places inside her head I don’t know if I’ll ever be allowed to see. In a smaller way I’ve seen things too that Kathy won’t. Yesterday I said goodbye to faces I’ve come to know in the halls of Cottage that Kathy won’t see – James, Jayne, Marilyn, Gary, Audrey Clark – a cavalcade of 50’s and 60’s Hollywood greats whose glamour photos along the first floor hall toward the elevators were removed to be replaced by some other installation. That Kathy will never see them is, to me, a sadness unlike any I have ever known with her.  I can tell her about them, even show them to her in another configuration at the Santa Barbara Museum of Art where they are housed. But it could never be the same anywhere other than what has become, to me, the hallowed halls of Cottage Hospital.

I can’t help but wonder what Kathy has witnessed through her sedated pilgrimage.  And to fight off the sadness of not knowing.

Hard for me to understand how this kind of ruefulness can creep into this day of joy. It’s the kind of insight that Kathy can help me with. Someday soon.

Day 44

She speaks!

 ‘Nuff said.

Day 50

Kathy’s progress over the past week has been incremental, steady and encouraging beyond anything the medical team studying her over the past month and a half had foreseen. It’s not that she has recovered all or even a major part her life that we enjoyed at the time she had her stroke. But even small advances can foretell potential changes that will bring us closer to that place. A wiggling of her right-hand thumb, something I’d been encouraging her to do it seems hourly for a week, finally happened several days ago. Then, a day later, her whole hand moved. And now she raises her arm all the way up to her head to re-position the adorable hat (thanks Jillian!) she wears over her bandaged head.

Bandaged because, two days ago, the “bone flap” that had been removed from her skull and placed in her tummy to allow her swollen brain room to expand, has now been returned to its former location. Her hair has begun to grow back, and I can truthfully assure all of you who have ever ungenerously suspected her of altering her lovely locks from their natural blond tones, you have been sorely mistaken.

As I’ve said, she does speak…loving sentiments and with her own lovely voice.  But speaking doesn’t come easily to her, and she will need many sessions of speech therapy, and many months of our working together (once I learn some of the therapists’ tricks) before she’ll be close to normal… with luck and hard work we’ll get there.

With the help of two dedicated people she can be brought to sit unsteadily at the side of her bed and then transferred to a special chair where she can survey from an upright perch her new world in Ridley-Tree One (downstairs from SICU).  

The NG tube (the tube feeding her through her nose) has been disposed of, and Kathy has admitted culpability for willfully having removed it herself in the dead of night while she was unattended. As I feared, my reprimands have come to nothing. It’s been decided that the NG won’t be replaced, and that instead we’ll see how she does without it.

Yesterday she had a Modified Barium Swallow study, which our friend Larry tells me is the gold standard for identifying and addressing swallowing disorders, something Kathy (and her therapists and nurses and I) will need to work on diligently and for quite some time. She will be confined to a strict diet of carefully chosen food textures and thickened liquids, and will need to follow strict swallowing protocols (head positioning for example), and required to have close supervision at all times when she is swallowing food, drink and medicines. Today I had the exquisite pleasure of assisting the speech therapist feed Kathy at her noontime meal, and of feeding her by myself at her evening meal (Kathy herself was the assistant spoon carrier that time).

Soon she will be discharged either to a “skilled nursing facility” or to an “acute rehabilitation facility,” either of which will be here in the Santa Barbara area.  It’s questionable whether she is ready for an acute rehab facility such as Cottage Hospital Rehab, as that would require four hours/day of focused therapy, which Kathy might not be able to do at this stage in her recovery.

 I have decided to keep her in this area primarily because I really want her eventually to be placed, hopefully very soon, in the Cottage Hospital Rehab facility, which by every account I’ve heard has a stellar therapy group. Transporting her to SLO, and then very soon back to Santa Barbara, would put an unnecessary burden on her…even moving her for two minutes through the hospital halls to one or another of her procedures and surgeries taxes her mind and body so much that it pains me to watch.

I hope to return to Morro Bay soon for a one-day turnaround to collect items Kathy (and I) will need for the long haul of Kathy’s rehabilitation (it will be my first return home in over a month and a half, and only the second time ever that I will have returned home either without her beside me, or without her waiting for me there).

She is looking lovelier than ever, especially with her sunny smile under the beautiful, madcap and  – it must be said – preposterously large Himalayan prayer flag quilt so lovingly made by Stacy, Laurel, and several dozens of contributors, many of whom I’m guessing had no idea of the hidden artist within them. Beneath it Kathy is transported into a truly otherworldly realm.

 Day 60

This might be the most thorough update of Kathy’s status yet…lots to report.

First, she has been shuttled straight to acute rehab, having been vetted by both the hospital for safe discharge and by Cottage Rehab for a capability to do four hours/day of combined therapies: Physical (basically lower body and extremities), Occupational (waist-arms) and Speech (neck up, where the mind stuff happens). Also, on top of the four hours, they throw in psychology.

Her therapies are on a fixed schedule, a half hour to an hour at a time, with rest periods and lunch giving her periodic breaks. For example, she’ll do a half hour of PT in the morning, then an hour in the afternoon.  At the end of her day she’s bushed, and needs a good two hours of sleep to be awakened for dinner. The rest is primarily to let her mind recuperate, although she does get plenty of physical exercise (compared to her previous two months of sleep and near-sleep). Six days a week.

The sessions, which I get to join, and am encouraged to join, are impressive. She has the attention not only of really good therapists, but of at least four in-house doctors, a case manager, and plenty of very skilled nurses.

So, how’s Kathy doing? Professional medical people, both at the hospital and at rehab, have used the same words to describe her medical salvation that I’ve used to describe the effect she has had in saving me from whatever lesser life I’d have lived had I not met her: amazing, miracle, bewildering. Kathy truly is becoming a poster child for neurological healing.

Yet that’s not to say there’s not a long hard row to hoe ahead. Kathy has endured an event of “massive bleeding” followed by several weeks of coma, brain swelling, vaso spasming, blow-your-mind drug intervention of the most addictive sort, and complications including prolonged resistance to awakening from paralytic and sedation intervention, and a considerable bout with pneumonia. As a result, her “deficits” are very present, and manifest themselves every moment of the day in myriad ways.

Yesterday I met with her rehab case manager, Max, who walked me through the Thursday (weekly) full-on seven-person (not counting therapists) team assessment. Mind you (she said) this is a very preliminary report (Kathy’d been admitted only two days prior), but here’s how it looks:

Anticipated discharge: 4-6 weeks

Anticipated discharge plan: home with adoring (small edit there, please excuse) husband

Anticipated discharge destination: facility setting (TBD at a later posting)

Other recommendations at discharge: PT, 1.5 hrs/day 5-6 hrs/week for 4 weeks; OT, 1.5 hrs/day 5 days/week; SLP (speech/language therapy), 1-1.5 hrs/day, 5-7 days/week x 4 weeks (See above TBD)

Current problems:

Impaired cognition, including severe short term memory loss, severe attention disorder, safety awareness problems, moderate swallowing disorder (need for constant swallowing supervision…side note: I’ve been spoon feeding her “honey thickened liquids,” with constant reminders to tuck chin and swallow twice – constant because of attention problems as she gets distracted very easily).

Impaired communication:  Poor initiation (identified as a barrier to being discharged). “Responds to questions only.” This basically means that, while Kathy can speak clearly and appropriately, she would rather not. For example, if you ask her a yes or no question, she will nod or shake her head in reply. But if you ask her a direct question, she will offer a very brief reply. Goal is eventually to achieve a conversational level.

Metabolic: Patient caregiver (me) to be educated in administering Lovenox. Maybe Kathy can teach me stuff like this.

Impaired leisure skills (they got that right…I played a version of ping pong with her and beat her three out of three, without even hardly cheating). She’s going to get some aquatic training for this, but I’m pretty sure I can beat her swimming too, at least in free style.

Impaired mobility: Right now she can’t sit up by herself, or even roll over in bed without help. But once in a wheelchair she can propel herself, and today she managed a few steps by herself with a walker and minimal support. Goal is eventually to have her capable of managing stairs, with supervision.

Impaired Nutrition/hydration. Current problem, but not identified as a barrier to discharge.

Here’s a really, really good one, one of my favorites…Pain Management: “Pt denies pain.” I can tell you this about Kathy: almost as much as she loves life, she hates pain (and not just for herself; at work she’s a great believer in epidurals.  But she herself stays away from all meds all the time). That she’s not in pain means the world to me.

Skin/Wound Management:  Scalp sutures, (from bone flap), PICC site healing, abdominal incision sites, all just need to be monitored and attended to…not considered barriers to discharge.

Impaired swallowing:  “highly at risk for aspiration with honey liquids.” This is one of my main tasks, to be with her at meals, to spoon feed her the (honey thickened) liquids in her diet…it needs to be done carefully, and I do it assiduously (“”Kathy, tuck! Tuck! Swallow twice! That didn’t look like you swallowed twice. Swallow!” It gets old, not just for me, but especially for Kathy, having to listen to me say it every single time, sometimes having to place my hand on her head and force her into a tuck…my great fear is that not only will she give me the look, but she’ll carry a subliminal grudge against me for the rest of our lives, just because I tried to save her from aspirating thick water…someone better back me up on this).

Risk of infection: Yes, but there are plenty of other more significant issues, so let’s move on – infection can be managed.

Safety and Risk and Restraint: Restraints are in place. Need side rails for bed, Bed alarm/wheelchair alarm, and X seat belts in wheelchair when not attended, due to risk of her causing self-harm, i.e., Kathy doesn’t recognize her limitations. (But really, who does? Still, for Kathy, and therefore for me, and for all of those who love her too, the risk of her falling is too great to ignore these precautions).

That’s about it for the initial (very abridged and ineptly edited) report. This will definitely be the last report of this kind. Neither Kathy nor I have any use for reality TV, and yet here I feel as if I’ve crossed over to that dark shore.

The undeniable reality is that Kathy is the best possible patient, will no doubt will herself to achieve the best possible outcome, has a (sleep deprived but eager) supporter who’s trying to be the best possible supporter he can be, has prayers surrounding her and infusing her from the most supportive universe of friends and family imaginable, and has lucked into a healthcare system at Cottage that practices what Kathy always preaches: Patient Care Above All.

Day 63

This two month adventure began late one night moments after watching two episodes of Mad Men on our TV. It has taken Kathy and me down the stairs of our home in a frenzied, foggy rush of EMT activity, into San Luis Obispo’s Sierra Vista ER room for a wrenching hour of hopeful hopelessness, then for  a  2:00 AM helicopter ride (for Kathy) and a panicked foggy drive (for me) to Santa Barbara (the last thing I heard at Sierra Vista was one nurse telling another that the copter might not be able to operate because of the fog), then long tear-filled weeks (for me) and comatose hell (for Kathy) in SICU 18, with operations more suited for science fiction than real life, followed by druggy awakenings in the Ridley Tree step-down unit, then the three block ride to Cottage Rehab where Kathy now resides along with her fellow patients – our current group of new, beautiful, damaged, courageous friends.

Over that course of surreal time more of life’s implausible milestones have happened for me than in all the accumulated years of my life. They have made me a changed person. I can’t describe how, and won’t try.

But I would like to mention two milestones that will stay with me forever, and bring tears to my eyes every time.

One happened when the medical team first began trying to awaken Kathy from her drug-induced coma. There was no telling when, whether, and how far into wakefulness she might be able to reach. At that time she had only shown an ability to “track” (that is, “look” in a purposeful way) and to slightly move the fingers of her left hand. We didn’t know if she would ever progress beyond that. Late at night, as I whispered my love to her, and my pleadings, and my encouragement, and I’ll never know what all else, and while staring into her eyes wondering whether she could truly see me or hear me, a tear appeared in her eye as she looked at me.  And then she slowly, and shakily, and with tremendous effort, raised her left hand to caress my cheek. That is the most momentous event of my life thus far.

And then tonight, another milestone.  As the night nurse left the room for other duties I turned off the room light, closed the door, helped Kathy scoot to the other side of her bed, raised it to a sitting position, sidled up beside her, turned on her iPad, and resumed watching Mad Men just where we’d left off.

Day 67

In my last post, although I got off topic for awhile, I tried to give an idea of how much progress Kathy made in just a few weeks’ time, from barely moving a finger to remembering where we’d left off watching a TV show two months previous. That accelerated progress continues. I now have this week’s official assessment of her status at Cottage Rehab. Last week they projected 4-6 weeks in that facility; now they’re saying it appears she will reach the acute rehab goals in 2-3 more weeks. At which time, assuming she qualifies on medical terms (open question) she will move on to a transitional facility that specializes in helping neurologically impaired patients re-enter their home environment with as much normality, safety and independence as possible. It’s based in Goleta, near enough to Santa Barbara that I can continue to live in the motel where I’ve been staying.

I am thankful beyond words for our good fortune of landing in the Cottage Hospital system, and the opportunity to improve even more on Kathy’s recovery opportunities through a neuro specialty transitional facility. Her outcomes to date have been tremendous. They include the ability to use all five of her senses, functional cognition that in many respects exactly mirrors her pre-stroke capabilities, speech capabilities that, physically, are the same as before, muscular/skeletal functions that have no debilitating impairments, and most of all the shining presence of Kathy herself unimpaired.

Of course, given the “massive hemorrhagic bleed” that she experienced, and the torturous reaction of er  brain throughout the long weeks of her coma, she has serious deficits, and only time will tell us how much improvement might be made upon them.  Here are some highlights of this week’s report card (I’ll try to be more concise than I was last week):

Impaired swallowing: Kathy has graduated from honey thickened liquids to nectar thickened to thin – still with supervision at all times (that’s me…sip once, remind each time of chin tuck, swallow once or more, alternate with regular, chopped foods).

Impaired cognition. Kathy has severe short term memory loss, plus her insight into her memory loss is poor. That is, she is not aware of her memory deficits. She “confabulates,” which means that she compensates for her memory loss by substituting imagined experiences. This is considered a “barrier to discharge.”

Impaired communication. Poor initiation, which basically means she’s disinclined to speak much.

Easily distracted, almost second-by-second at times.

Fatigue. She can rise to an occasion, as with visitors, but mostly she’s just tired. It’s her mind that needs restfulness; physically she’s weak but not usually in need of rest for that reason.

Needs restraints. Must have crisscross seat belt in the wheelchair, bed rails. That’s because she doesn’t remember she can’t walk, and so could injure herself if not restrained. The very good news is she’s not impulsive (a high risk for patients with right frontal lobe injury).

Impaired mobility: Currently she is confined to a wheelchair. Goal at discharge is to have her able to walk (with walker) 150’ and negotiate the stairs of our home with both-side handrails and my supervision, plus other ADA equipment we’ll need to install.

Impaired self-care management. TBD, with this to be worked on more at the transitional facility…things like self-dressing, toileting, bathing.

There’s more, but let’s just leave it at there’s much to work on. Some long-term outcomes can be predicted, but much more is uncertain. I spent an early part of last night on some healing steps that I’m often drawn to, wondering how our lives will be changed once we start settling back into an approximation of our former rhythms. Wondering about what awaits us and how we can make new rhythms is something I could do better with Kathy‘s help. Alone and fearful, it makes for some pretty soul-crushing hours.

But she’s not ready for thinking about the future. Now, it’s plenty for her to just hold on and improve day by day, and understand that she’s progressing. I really love being part of that process: seeing the beautiful woman she is emerge in ways that are even more expressive than ever. Even though she’s not ready to wonder about what comes next for us, when I asked her today if she does wonder about some things, she paused long enough that I thought she might have forgotten that I’d asked a question (that happens).  After maybe a full minute she said “yes.” Then another long pause. I asked her what she wondered about, and she said, “If there’s a god and a heaven.” I asked her why it had occurred to her to wonder that, after so many years of our living apart from questions of theology. And she said, because she had come so close to finding out.

That’s part of what I mean by her becoming even more beautiful to me than ever before. It’s something I see in her face. I can’t get enough of just looking at her.

Day 71

The most inspirational people I know, after Kathy, are identical twins. They have diverged in the paths through life they’ve taken, but each of them admires and loves the other’s chosen path. One of their choices is to have become best friends. I believe that no one could be better educated in the truly important verities of life than the father, or the mother, of such women. That’s one way that Kathy and I have been blessed.

Kathy is flowering into another Kathy, one that’s exactly like the lovely and regal and inscrutable woman I’ve been in love with and baffled by for decades, and also into another flower. I see her becoming, like her daughters, someone strangely different and still somewhat the same, a kind of identical twin of herself. Having twins has been, and is, the great pleasure of our lives. Not that there haven’t been setbacks. Yes indeed, there have been setbacks. But they have become the beautifully fulfilling astonishment we’d imagined when Abby and Paige were kids. And I’m looking for a similar fulfillment in my later years with my new Kathys.

Her status report arrived this morning, full of good news, and news that was presented to me as discouragement and forewarning (although I decline to acknowledge it as such). The two sets of news are flip sides of each other. Kathy has made great advancements in important ways. She has made great strides with her mobility. Her medical team, having observed Kathy’s composure and easy acceptance of wheelchair and bed confinement, decided to experiment with removing her restraints. Within half an hour without supervision she was discovered on her bedroom floor, having fallen. Her improved mobility had made it possible for her to attempt the walk all the way across the room, which she succeeded in doing. And almost all the way back. She was uninjured, but is now again on full restraint.

Why did this happen? Her cognition testing shows an absence of insight into her “deficits,” as they are called.  She doesn’t always know that she has memory deprivation, or mobility problems, or balancing issues, or any number of challenges that threaten safety. The medical team can’t predict when, or whether, these issues will improve. And so one scenario, I’m told, is that she could need 24 hour supervision indefinitely.

As you can imagine, that might require significant lifestyle adjustments. That’s okay. It’s even better than okay. I see her “deficits” as openings to something new, challenging and fun. Like travel in unfamiliar lands: colorful, crazy, sometimes tiring and hard. But all good.

You couldn’t ask for a better traveling companion. I mean companions.

Day 77

Here are just some of the obvious ways to measure Kathy’s recovery progress to date. She can speak (with her own lovely voice). She can swallow like a champ, and eat and drink whatever she likes without assistance. She can carry on a phone conversation such that you would never know she has been brain injured. With moderate assistance (mechanical and human) she can walk, and her mobility is improving by the day. Her long term memory is just as healthy as ever, and her short term memory deficits improve every day, responsive to therapy. Her strength and balance are coming back. “The look” has returned, renewed, rewound, and ready for action, apparently intent on making up for lost time.

She’s being reacquainted with the experience of fun. She almost won a ping pong match with Waylon and Avalon (nets just get in the way). We have ventured into the world with friends and family: wheelchairing at Hendry’s Beach, poolside lunch gathering at my current lodgings, movies with Abby and Ashley.

But mostly Kathy does rehab time, often with me along for the therapy. Here in my new favorite Santa Barbara hangout (its dining room rivals the hospital cafeteria’s for open hearts per capita).

I’ll bet I’ve met well over a hundred regulars here at Cottage Rehabilitation Hospital. Many are recovering patients, others are their recoverers – the doctors, nurses, and attentive staff (made up in large part by returning patients).  And I’ve met some you could call, without stretching the definition of the word too far, recovered. Of those who leave rehab for their homes a small number might be called that, if you could say they and those who love them will all go forward feeling themselves renewed, not compromised.

By that definition of recovery, Kathy is already there. She has progressed to the point where I know we will carry with us the essentials of our life together and, on top of that, a clearer, larger, more colorful, and more textured sense of the day to day. Plus for me, a better appreciation of the hard work and kindness of not only the caregivers but also the caregiven, those who gracefully and heroically accept the loving, hands-on, intimate attention of strangers. Kathy has done both now. I guess I’ve never known how to feel completely humbled. I do now.

For Kathy there remains a long but, every passing day, less uncertain battle.

Day 82

Today has a bittersweet taste: we’re moving on from the Cottage Health System. Cottage Hospital literally gave us new life, delivering Kathy (to use a religious and L&D term) back from the brink. And then Cottage Rehab began the reconstruction…our month-long engagement with its workhorse therapeutic regime has brought us closer to our home – our true home, of our hearts and minds and bodies –  in a way that I could barely imagine just weeks ago.  As I think I said in a previous post, the past three months have transformed Kathy and me in ways I can’t yet begin to comprehend, and much of that has to do with our almost total immersion in Cottage life.

But today we move on. Solutions, a Goleta-based transition home for neurologically recovering patients, has accepted Kathy as a patient/guest.  Kathy will be there for at least two weeks, hopefully more. I say hopefully because the past month has absolutely persuaded me that the effectiveness of professional therapy, of which I had heard much but not experienced firsthand, is fact. The more of it Kathy can get the surer our path becomes, which I know to be a good thing even though (or maybe because) we don’t know the destination.

 Wherever we go, whatever awaits us, nothing now can slow us down. People say don’t give up hope. I agree. More than I have ever had occasion to, I agree with that. And yet, something else has happened to me. The experience of having come to the frightening precipice of giving up, and then being delivered the gift of recovered life, must be something like a religious awakening. And maybe that’s what I’ll be going forward, an awakened person. I know I’ll never be religious in some of the accepted ways that the word is understood, as a system of fixed beliefs. Sometimes I wish I could be, seeing the comforts it brings to others. But I feel that the life Kathy and I have made works in ways just as beautiful and as firmly-founded, and I know it will support us well through the coming months, years, hopefully decades. And I know this: no one will count their blessings more religiously (to use the word in a slightly different way) than me.

It’s been, as they say, a journey of discovery. Not so much a journey of self-discovery, although there’s been enough of that too, maybe more than enough.  It’s really been a discovery of much else that life serves up, and in ways that in the past I haven’t experienced in more than a casually meaningful way – sadness, dread, elation, desolation – powerful emotions that we all experience in passing. But now some things are different. Now, for example, I shrink at the sound of a helicopter on approach to the hospital, knowing it carries incoming wounded, as Kathy was in her ride here. And there’s even good in the shiver up my spine when I hear that choppering noise.

Here’s something else new that I like: Kathy’s latest unfolding beauty is fun to watch. She has taken to her new style of life in a very expressive way. Her aura has attracted the eyes of just about everyone she passed in the halls at rehab, not because she’s in a wheelchair or using a walker (who isn’t at rehab?) or because she shows the fresh scars of the slab of her cranium recently replaced (other rehabbers show wounds that tell stories too). She just emanates Kathy with an even more stimulating calm, if that were possible.

Her shaved skull has started to grow hair, and I’ve been trying to convince her (so far with little effect) to grow it only to a kind of very short pixie-like cut.  She has a perfectly formed head, which shows her face to angelic advantage. 

Anyone who’s on my side, please support my campaign to keep her hair cropped. When Kathy feels strong enough to mount a misguided effort to cover her natural cranial loveliness with a lot of hair, as I predict she will, I’ll need your help.

Day 87

Kathy is progressing beyond all expectation. Among her latest achievements, she can walk semi-unattended with a walker, “transfer” from bed to walker, walker to car or chair, help others (mostly me) remember stuff, read with true interest, converse normally, become enthusiastic about what’s to come, and try real hard to achieve more.

Her situation at Solutions is perfect-like. For each of five days a week she gets six hours of therapy – a combination of OT, PT, speech, and psych. Weekends are free, and Kathy and I can use them however we choose. Solutions is a residential home in a residential neighborhood. There are currently three other patients, and the house accommodates a maximum of six. Part of the idea is to situate patients in a home setting to help transition neurologically disabled tryers from acute care to the day-to-day challenges of living in their own home settings.

She has been approved for at least one month. I hope we get from that month some semblance of what we’ve gotten sp far. The past three months have been an amazing, stupefying, enlightening journey. It began, against long odds, with the hope that Kathy would cling to enough life to make continued living viable. It has already come to a point that we not only envision our former life recaptured, but now also have plenty of new opportunities and new commitments to vitalize our remaining years – in ways we would not have known were it not for Kathy’s stroke. What was a horrifying ordeal at first can be looked back upon now as a path opening to new possibilities.

For me the journey has included persistent moments of despair and of unbridled joy. For Kathy, the journey has been deeper and fuller, and my hope is that over time, as Kathy gains access to the memory of it, I’ll become privy to much of what she knows of what she’s experienced. We’ll see.

For both of us I know the days and hours have been elongated by having been stuffed so full of hope and anxiety. There have been countless milestones on the seemingly simple path from, say, twitching to palpable touching.  Or from sleep to stirring, stirring to staring, then from staring to seeing, and on to tracking and looking and watching, and then to understanding and on to curiosity about what her eyes were taking in.

Just take curiosity: the good and the bad. For Kathy to wonder was a sign of improving (or increasing) cognition. But, for awhile, eating was a challenge any time there was anything to catch Kathy’s curious eye. Each passing day – with therapy – saw Kathy seeing better (i.e., less distractedly) what needed to be done about swallowing with greater focus, and less preoccupied with “seeing everything.”

Here’s another example of the meaningfulness of small advancements. There’s a nighttime SICU nurse, Dustin, who was on duty a night shortly after Kathy had stirred back to wakefulness, had looked, and heard, and started to feel tactilely on her left side. But we were very worried, for several agonizing days, that nothing was happening on her right side.  As Abby and Paige and I were leaving SICU late that night Dustin called me back to tell me that Kathy’s right toe had responded. What that meant is that, when Dustin applied an extremely painful squeezing pressure to her toe, she had flinched.  We were ecstatic at the news, as it meant that – possibly – Kathy would retrieve feeling, maybe even mobility, on her right side.

For hurting my wife, Dustin gets huge hugs of thanks. Life delivers strange moments.

From that flinch, and a right thumb twitch a day or two later, and a weak but definite squeeze of the hand some time after that, and much later on using her right hand to carry a spoonful of food to her mouth without its shaking so violently that her towel bib took hit after hit. And on and on, through more minute progressions than I am prepared to write, or you to read, Kathy’s right-side capability has progressed to a point where it appears possible we won’t even need a right-side stairway handrail when we return home.

And that’s just one example. Each day has brought many. Every tiny progression is a harbinger of greater possibility. But more than that, each small step is in itself is a quality of life changer. Just to be able to swallow successfully means, at least for us, that Kathy can eat whatever she likes of whatever texture she likes, drink liquids that are not thickened, use normal cutlery, cough productively, and, most importantly, feed herself (although Kathy might say that the most important life change for her would be not having to listen to me say, with each bite or sip, ”Now tuck! Kathy, tuck! Now swallow twice. Kathy, twice!).

Our blessings are endless.