Red Nose This......

Happy Holidays,
Just Enough Snowfall,
and a Brilliant New Year to All!

Wishing Everyone Good Health and Peace!!!

Love From Us Both!!!!!

-- Paul and Sonja

She's Alive!!!!......She's Alive!!!!

Hello Everyone, Sonja here.

I was released from the hospital two weeks ago today and I couldn't be happier to be home. What an experience! I hope none of you go through anything close. Being on the other side of it, I must say I have never felt better. How strange is that? They still have no idea of what caused my organs to fail...or what made me blow up to resemble the Michelin Tire Man.....or what made them so sure I would need a liver transplant...etc. The upshot of the entire experience is that all of my organs are back on line and functioning at 100% capacity. The irregular heartbeat is still there, but the cardiologist is talking about "shocking" me back into a regular heartbeat. They do it all the time. Sounds a bit daunting but you are knocked out for the procedure, so what the hell.

I am on lots of meds, using a walker but I'm getting noticably stronger daily. And very very happy to be here. I go back to teaching at Cornell the middle of January. By then I hope to be snow-shoeing through town.

From what I'm told, I was "sundowning" quite a bit during this illness. I know that in my head I was many places other than my hospital room. Initially, I was convinced I was making a movie, playing a Dutch girl (??!?!don't ask), then I was convinced I was going on Oprah and my entire situation was being made into a sitcom (so in true actor fashion my delusions were about looking for work) then I was convinced they kept changing my room on me, and oh, yes, the headless cats running around. Thank God for Paul keeping track of this stuff. Speaking of Paul, let me go on record and say that I have the most wonderful husband in the world. He never left my side. There is no way I could have gotten through this experience without his love and support. Then and now.

Let me also go on record and say that neither of us could have weathered any of this without our friends and family. I was humble and grateful and oh so thankful for all of you and for your comfort, your prayers and good wishes, and your support at every turn. There are no words that can say what I feel.



Merry Christmas to all of you. And a Happy New Year. I hope to see you all this coming year.

Love, peace & good health,

Sonja

-- Paul and Sonja
959 Dryden Rd., #D
Ithaca, NY 14850
334-669-8657

What's Left Unsaid.......(Updated 12/8)..........................................

So.............seven days home now, and the dust is finally settling a bit.

We've had home care periodically over these last days, nurses to continue monitoring Sonja's blood work and a physical therapist to help her become more mobile (and as my high school football coach would have said, "....agile and hostile!!!") and to regain her strength more fully. She is getting stronger every day. Her use of the walker now is minimal (no longer used at all in the apt.), and her appetite, though still visited by strange cravings, has largely returned. And last Tuesday we began a new relationship with an internist/GP here in Ithaca. That was a long afternoon, but all went very well as we transitioned to local care here, and we both liked our new doctor very much (a young woman originally from Prague with the stunning first name of Lucia). And next week we see a local cardiologist to begin the monitoring of her now medicinally controlled atrial fibrillation.

It has been wonderful to be back, as you can imagine. It has taken awhile to really feel that we were back again. I think we both were so fully immersed in the world of Hospital, and everything that subculture represents, that it has taken a few days to de-compress and let go of those environments. But some of it all, some of the images and impressions, remain more strongly present than I might have guessed, and so, with your indulgence, I'll relate a few last experiences that shaped our day to day experiences there.

The most obvious begins with a simple question. Why do so many hospitals and medical centers in this country find themselves located directly across the street from major cemeteries?? Maybe it's me and my sense of the morbid but I know on more than one occasion I've been struck by this odd convergence of the hopeful and the past hope. You don't have to be a huge fan of the macabre to feel a little weirdness staring out the window of your hospital room, only to be faced by acres of tombstones lining up across the street.

Mt. Hope Cemetery (irony perhaps fully intended) rolls on for hill after hill the full length of Elmwood St., along the entire street front of Strong Memorial, and probably for some distance beyond. Staring from any window, you try to think of it just as some kind of huge park or greenspace, but sooner or later your confronted by it's real function, and depending on your particular circumstances, you end up looking at the sky a lot. Which is maybe not a bad thing. The truth is if your stuck there long enough, the weirdness fades into the background, and you come to embrace the view, to embrace the metaphorical certainty that your not across the street yet. And then, as with many aspects of long hospital stays, it becomes strangely reassuring.

And speaking of the view......there was one very, very long afternoon about two weeks into our arrival, when I had just finished a long interview with a nurse practitioner from the Liver Transplant Team, and things in general were looking pretty bleak. The rooms in the ICU have all recently been renovated, so there are small alcoves in each room with chairs and a wall couch by the window. I was sitting there alone, with Sonja unconscious in her bed, staring blankly out the window at the square of huge brick buildings that opened out across from ours. Suddenly into that open corridor of air the largest red-tail hawk you've ever seen floated into view. Drifting on the wind from the direction of the cemetery (ok, another plus), it rode the currents first higher, and then back down to eye level slowly, achingly slow, across my field of vision and into (bear with me here) the sunset. He was close enough to see his pin feathers, the spread of the feathers in his tail. It was one of the most beautiful things I've ever seen, and regardless of one's perspectives on faith, signs and meaning, was truly uplifting at a time when I desperately needed something to help me keep going. And it did.

And speaking of the Liver Transplant Team......I'm sorry, I know these guys do truly astonishing work, but I couldn't help but come to think of all of them as Ghouls. While I was desperately hoping and praying that her liver would recover, these folks were obligated to get me familiar with the protocols and procedures for being listed on the roll for a donated liver. It was their job. But trust me, there's a world of difference between a doctor who observes and treats the whole person (such as our lead doc, David Kauffman, the head of surgical ICU), and a surgeon. I won't say they were insensitive to what I was going through....well, actually, yeah, I will say that, especially that asshole who forced me to go over all the paperwork the day of the red-tailed hawk. So there. That's all I have to say about liver transplants and surgeons (thank god).

And the endless hallways.......There was a hallway on the eight floor, the ICU/PCU floor, that curved away into the end of the building, where the far less used utility elevators were. It had large windows on three sides, and was a favorite place for the families of patients to wander into for calls on their cells or to just get away. Unremarkable except for the one, largest window, facing the longest and prettiest view of Mt. Hope (it was fall foliage after all), I spent a fair amount of time here talking on the phone to our many friends and Sonja's Mom and brother David.

After awhile, I began to notice that, looked at from a few feet away and at an angle, this window showed a series of smudges, small rectangles really, at varying heights across the length of the window. Didn't think much of it at the time, but then I noticed that the other windows didn't have the same smudges, and then I started to wonder why. The mystery was solved a few days later, when turning the corner I saw an obviously stressed caretaker on her cell phone standing by said window, and as I turned to give her some privacy, she ever so slowly leaned forward, until her forehead was touching the glass. She just stood there, listening, not saying anything on her end of the conversation, lost in her own thoughts. Later, under closer examination of the window, it was clear that pain, care and sorrow had struck everyone from approximately 5'3' to 6'4'. And those were just the ones who'd found some comfort in leaning.

And then there was the last week and a half spent in a "regular room" on another floor in the hospital, in our case the fifth. We were in 5.1400, the neurological unit, so most of the other patients were recovering from or dealing with strokes, epilepsy, and other brain related disorders. More than that, we were in the "real" hospital now, where each nurse has 5-6 patients every shift, which often seem like 7-8 given the demands of specific, individual patients. Like Mr. Luskey, a deaf patient recovering from some kind of neurological problem (happily, each patient's privacy is surprisingly well protected), who in his frustrated inability to communicate would yell, moan and occasionally throw things to make his point about today's menu or TV choices. And halfway through that last week a young mentally retarded woman was admitted, who was terrified of this new environment. Whenever her mother wasn't present (which ended up being to be most of the time), she would howl and moan in general fear and anxiety.

The nurses would do what they could to comfort her, and Mr. L. for that matter, but all the rooms are arranged in a circle that faces the center nurse's station, and so the cries were unavoidable, door shut or not. And after awhile, given the pressures of the job, most of the nurses would assume that veneer of professionalism to get past the straightforward pain of listening to this kind of unhappiness for a 12 hour shift, and seem, finally, to not hear the bedlam ringing through the hall. It was a little like that terrible opening scene in the film version of Amadeus, when Salieri is in the asylum surrounded by the chaos of the insane and the discarded. It is the panoply of sound that you remember from the scene. And these similar emotional triggers are just not, perhaps naively, what one expects to encounter in a modern hospital.

(Although, just as a side bar, I suppose I think of Amadeus and Salieri in this context because for awhile there while Sonja was still in the ICU and deep in her drug driven delirium, she was convinced that F. Murray Abraham was a patient in the room next door. In truth the guy next to us did have a darker, sort of swarthy Fmurray thing going on, but as they were both completely bedridden I to this day have no idea how she got any kind of a look at him to jump start such a fantasy, or why Fmurray in the first place. She of course has no memory of this at all. Another mystery).

Lastly, and happily, I was continually struck by, overwhelmed by, the simple day to day kindness of strangers. I've spoken before in these pages about the thunderous blessings provided by our many friends and family. But it needs to be mentioned as well how many people took the time to just say something kind, or personal, or caring. The guys at the Finger Lakes Coffee emporium in the lobby from whom I got my morning Ginger Oolong, and came to refer to me as Mr. Tea, pouring the cup without asking. The cashier Beth in the (shudder) Cafeteria who always took the time to chat. The best of the nurses, some of whom have a capacity for caring and service that far outstrips their already formidable range of knowledge and skill.

And most strikingly, all the "unseen" staff, the men and women, mostly African American, that stock the closets and bring the food trays and empty the trash. There is a class structure in an organization as large as a major hospital, if only economic, and yet many of these folks were the kindest and most sincere people we met. Saying good morning or even just hello as they worked became for me I suppose a way of reaching out for connection, and though sometimes surprised, they were unfailingly kind and genuinely caring. There is nothing condescending in this, at least for me. They taught me a great deal, and I won't forget any of them.

And so there you are. We're back now. All organs are intact, and she's getting stronger as we speak (she just arose from our funky, low-rise couch all by herself!). The next posting on this sight will hopefully be from the Wonder Patient herself, so stay tuned.



And thanks for everything.......

-- Paul

HOME!!!!!

Just wanted to let everyone know the great news. Sonja was discharged this morning from the hospital in Rochester, and we are both now back again in Ithaca!!!

Fifty seven days. Exactly eight weeks by the calender.

.......Home.

She's doing fine, and I'll write more in the next day or two about the last week and our last days (and nights) at Strong Memorial. In the meantime......Thanks to all for everything, and love from us both!!!!

-- Paul

Forty Eight Days.....And Here To Give Thanks.

Happy Thanksgiving!!! Wishing nothing but Joy and Good Digestion to one and all!!!!

Well, nothing but good news here from Rochester. After 48 days on the eighth floor here at Strong Memorial......first in the ICU, then in the PCU (progressive care unit), then back to the ICU, and then finally again to the PCU......Sonja was released last night down to a regular room on the fifth floor, general population, to complete her rehab. Yippee, I say, Yippee!!

She gets stronger every day. The current hurdles are these. She has contracted a bladder infection of some kind, probably due to having a Foley Catheter in her bladder for this entire seven weeks, and that has to be dealt with (it's a matter of pinning down the specific bacteria/infection involved, and then using the right kind of antibiotic in balance with her recovering liver and kidneys. And while we're on the subject, allow me to suggest the next time you hear someone ask their doctor for antibiotics because they think they have the flu, a cold, etc., that you take up a large piece of wood and smack them up the side of the head with it. I've seen these drugs save Sonja's life two or three times, and they need to be used at the right time in the right way or they become useless. Useless. Trust me, that's not what you want).

We also need to control her heart rate better; she's still in a. fib., and spiking with her increased levels of activity. Both the atrial fibrillation and her "tachy" heart rate can be controlled with medication.....it's about balancing the right meds once she is stronger, her legs are doing their own work, and we can get a truer picture of her overall heart function.

And most importantly, she needs to continue getting stronger. She's made remarkable progress over the past few days. She stood for the first time just this Monday, and now is up and already walking with assistance (soon she'll have her walker in a white knuckle grip, stalking the lonely halls like some sleek beast of prey, hunting that Patient Care Technician who wakes her each night to check her vitals. That's right, it's time for a little pin-prickin' payback!!!). The goals are the obvious ones; getting her legs and arms strong enough again so that she can comfortably care for herself and get around on her own.

And then with a little bit of luck, in the next week or two we'll finally hear the two sweetest words in the English language....."Your discharged!". What comes after that depends on how quickly she gets her strength back. It may mean a brief stay in a transitional rehab facility back in Ithaca, or maybe straight home with me and rehab continued on an outpatient basis. We'll just have to wait and see.

Whichever way it goes is fine with me right now. Today we're going to have a little turkey here in room 5.1623, watch the parade, and celebrate the day for what it represents more than it ever has to us.........giving thanks.

-- Paul

My Life As A Dog.....

So..........Things have improved markedly this week. When we last left Sonja, she was struggling with breathing, her lungs filed with excess fluid, and the fear was that she might have contracted pneumonia.

Happily, that turned out not to be the case.

Her blood pressure remained strong enough for them to continue to give her a strong diuretic called lasik, and it has done the trick. The swelling is down all over her body, and as just one of the benefits, she's can now commit to working on her physical therapy, especially toward regaining the strength in her legs.

The other noticeable benefit of reducing the swelling throughout her system is that she's more alert, more voluble and talkative. The effects of her "sundowning" have lessened, and she seems more focused in her occasional delirium, if that makes any sense; it seems to be more about her attempts to come to terms with short term memory loss and the stress of the ICU than anything else.

So it's been a good week, a very good week. Though indicative of this whole experience, I sit here now typing this while she naps, Friday night about 9pm, and her temperature has been heading up toward fever for the past hour and a half. It is probably nothing. But all we can do is sit here and "keep an eye on it", as her nurse just said. All we can do......

......And here it is on Sat. afternoon, and happily her low grade fever has calmed down and she's fine again. We've worked the exercises for her legs once already today, she's sat up at the edge of the bed and "dangled" (their term for this process) her legs over, and she's gotten into the Stryker chair for a couple of hours. Her strength is slowly returning, and she's starting to eat again (I've pretty much given up on the hospital's food, and have been making daily trips to Wegmans for supplies). All very good news!!! More to come later this week.....Once you've dangled, can walking be far behind!!!????



And now, from the Surreal Files: Thursday morning Sonja had to be wheeled down to Radiology to have a new PICC IV line put it. It's a specialized kind of arterial line (I believe) that goes in through the upper arm or chest and is threaded through the artery toward the heart. Anyway, the one that had been sited for Sonja last week had pulled loose, and so a new one was needed. The special PICC nurse tried to do it at bedside Tues. night, but couldn't locate the vein well enough to feel comfortable with the procedure, so it was decided that they would do it in Radiology, where they have sophisticated imaging equipment to make it a much simpler, safer affair.

At any rate, it took Radiology two days to make it happen, and finally our whole little troupe, Sonja and I and her nurse du jour, Tammy, with the help of two hulking transportation techs, wheeled down to the basement and into the staging room. Thereupon the nurse assigned from Radiology, Emily, picked up her clipboard and, after some preliminaries, began asking the fully conscious Sonja a pretty typical battery of questons about her medical history. Allergies? Ever smoke? For how long? Etc., etc. So this goes on for some time, and I realize that with her memory gaps from medication and delirium, she's only answering about half of the questions correctly. So I decide to wait for Emily to conclude her questions, and then I'll find the right moment to get her the info without embarrassing Sonja or seeming to correct her in front of everyone (two doctors are by now part of the mix). Which it what happens.

And then I'm ushered outside while they do their medical magic, and I'm sent to the "waiting room". This consists of a long, and I mean really long, thin fluorescent-lit corridor, with about sixty identical waiting room chairs lined up, all along one wall of this corridor. So I sit there, facing the dry wall across from me, and do what any sane person does....I abjure the two year old magazines, whip out a paperback (cheap, escapist science fiction), and try to assert some degree of The Normal by diving into the book. After a short while, a tiny, wizened old woman is herself ushered to a chair near me and told to wait for her own procedure to begin.

She's fascinating in a Twin Peaks kind of way. Not a "little person", but very small, with long blonde-gray hair and eye glasses thick enough to make you hope that somebody else drove her to the hospital this morning. And then you realize that that is part of the reason she fascinates; something about her makes you believe that she's been in charge of her own life, by god, since before you were born. There is a strength and a power about her that is palpable, that fills this already small space with no effort at all. She's wearing dark red heavy wool slacks with sensible flats, and a heavy green and gray checked barn coat, collar turned up now more against the fear of being here than the cold outside. While I sit and sneak glances her way, a child is led down the corridor by a nurse in scrubs and her parents, a little tow-headed blonde girl clutching a stuffed dog. She is calm and obedient while her parents make small talk with the nurse, who mentions as they pass me that it's been years since they last saw this same little girl.

Distracted, I try to read again, and am just starting to regain my place in the book when through closed doors that same child, one has to assume by proximity and the voices involved, starts to scream. I mean she's howling with the kind of wrenching despair that only a child can reach down for when they're really, really scared, and these idiotic adults don't seem to get it, for Christ's sake, and why did she ever trust these losers in the first place!! Collectively we're supposed to ignore this kind of thing, in this kind of environment, and I try, reflexively, I try..,..but the kid keeps screaming, over the obvious efforts of everyone in that room to quiet her, and finally you have to just put the book down pay attention to it.

And then I turn, and Little Woman is staring at me, and for one horrible moment I feel like whatever the kid is going through is somehow my fault. That I've just been judged. And I sort of half smile and try to share some kind of "moment" with Little Woman, you know, the way we all do when something terrible has just happened but your not really responsible and damned happy that it hasn't happened to either of you!! She acknowledges nothing, and instead with an empty expression that could mean anything turns away from me again, faces forward, and then the screaming finally stops. It occurs to me that she might have hoped I was an entrant to the Fun House, like she and the child, and was disappointed that my glance didn't share her own fears of what might await her and her own testing later that day. Moments later another nurse materializes and asks Little Woman to follow her (happily, given my frame of mind by that point, in a genuinely kind and gentle way). She rises with an unthinking dignity, and I'm alone again.

And then the absurdity of the earlier scene back in Radiology strikes home. There we were, surrounded by literally millions and millions of dollars worth of equipment, while Nurse Emily dutifully recorded the responses of a someone who's memory of late hasn't been the greatest and Nurse Tammy just smilingly nodded and I looked on wondering when to jump in to make sure none of these people hurt each other.

And this was a good day.......



More to come.

-- Paul

Better News.....

Just wanted to get a quick posting online this morning to say that Sonja is doing better; we seem to have avoided the issue of pneumonia, her lungs are functioning better, and she's gotten a lot of fluid off with the help of the diuretics. All very good news. More to come soon.

-- Paul