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

And One More Update....Veteran's Day!!

The U.S.S. Indiana


And finally, a brief nod to Veteran's Day.

I was driving out of the parking garage this afternoon to take a short walk (beautiful, fall day here in Rochester) and have some lunch. The little retired gentleman in the ticket booth was moving fairly slowly, and I noticed that he was wearing one of those baseball caps with the logo of a Navy ship on the front, in this case the U.S.S. Indiana.

So more to make conversation than anything else, I complimented him on his hat.

(Truth is, I was confusing the Indiana with the U.S.S Indianapolis, the ship sunk by the Japanese after she had delivered the A-Bomb, and in which only 317 survived of a crew of 1196 for a variety of terrible reasons). He beamed, and told me how proud he had been to serve on the Indiana.

"She was a fine ship, a great ship!!"

"You mean you actually served on her?"

"Absolutely!! Seventeen years old!! Lied to get in at that age. Proudest years of my life. You know, she was the second ship to sail into Tokyo Bay at the end of the war!! I'll tell you what, when we sailed in that day, the Japanese knew the real meaning of Pearl Harbor!!"

No politics. No cynicism. No obvious statements about the waste of war. I just thanked him. I'd like to say that in some small way I'd made his day, by noticing his hat and chatting with him about it. The truth is that in no small way, by seeing how he was lit up by the still vivid memories of some of his proudest days, he'd made mine.

All the best to everyone, more to come and love from us both!!

-- Paul

Ups and Downs......

It's Sunday afternoon as I write this, and we've had a rough few days since my last entry. It began on Friday, as Sonja's team of doctors decided that the time had come to take her off the IV nutrients (TPN and Lipids) she was still receiving intravenously. The reasoning is that much of these fluids are composed of sugar and water, very good for feeding a patient, and unfortunately also very good for feeding bacteria should Sonja develop another infection. We had come far enough in her progress that now this one more possible area of setback could comfortably be eliminated. Well, that's really the wrong word, because if you stop feeding a patient that way, obviously they either have to now be ready to eat whole food again, or have a thin feeding tube inserted down through their nasal cavity past the stomach to the duodenum, a small, hollow tube that is the first part of the small intestine, where most chemical digestion takes place (sorry, probably should have had a Don't Read Right After Lunch Disclaimer on this section). Well, you can guess where this is going. The docs gave Sonja the choice of the two options listed above, and she strongly turned down eating whole foods. If any of you have gone through a prolonged illness or a surgery, you'll recognize that reaction to food in general; your intestines, like your legs, haven't been working at their usual rate, and food seems not only irrelevant but a bit repulsive. So we went with the tube (which has the added advantage of providing the nurses with what amounts to another iv line for the administering of necessary medicines). This took some time. First a mild sedative had to be administered (Versed in this case), and then the tube has to be introduced down through the nose, and the patient has to be alert enough to assist the procedure by literally "swallowing" the length of the tube as it's placed past the stomach. Well, there isn't a "mild sedative" in the world that's going to actually take the pain and general discomfort out of this procedure, but done well it doesn't last very long and is, if you'll pardon the expression, pretty straightforward (as long as it's not being done to you!). So mid-afternoon we get the tube down Sonja's throat, and then they have to x-ray it to ensure that that it's correctly placed. Then the docs have to look at the x-ray and ok it. And THEN the nurse can finally start the process of slowly weening her off the IV fluids and onto feeding her through the tube. All that takes a couple of hours, but it works out, and after about an hour or so, I look up to where Sony is lying in the bed, and realize that she has pulled half of the tube back out of her nostril. OK, it's not entirely out, so one of the ICU nurses (what the other nurses refer to euphemistically as a SWAT nurse) comes in and re-places the tube down her throat......and then we need another s-ray, etc. All that happens, it's all copacetic, and I leave for an hour and a half to grab some dinner. When I come back, her nurse informs me that Sonja has just pulled the tube out again, this time all the way. Little stinker is lying there with a half-grin on her face, successful against all the odds!! Sooooo, the doctor has to return, and re-do all of this process again, really only a serious problem in that Sonja has to suffer once more through the re-insertion. So we don't get her actually started on the change in food regimen 'till 10 or 11pm. Part of the problem in the process of course is that Sonja's delirium continues to come and go at this point in time, so you can't just reason with a rational adult about why pulling out the tube is a bad thing; when she's phasing through a foggy patch, it doesn't mean anything to her. Now, why she's still evidencing the delirium is tougher to answer. It looks at this stage of things as if it has to do with her own body's chemistry, rate of fluid removal and retention of excess sodium in her system. I had the whole thing explained to me in pretty explicit detail, but that's about all I could glean from it. And it's further complicated by the fact that other elements (intermittent sedation, response to the previous infections, etc.) could still be in play as well. it should at some point lift more consistently, but in truth no one can say whether in a day or a week. All small potatoes really when it was discovered this morning that her lungs weren't working as well as they should. The fear this time was that she may have aspirated some of the food from her tube when, late Sat. while re-positioning her in the bed, she regurgitated some of that same food. The danger here is that if that food (or even a small part of it) worked it's way into her lungs, it could lead again to infection and in this case, pneumonia. That would be, in her current condition, very, very,very bad. So we went from the little two pronged nose tube that fits comfortably into your nose to give you oxygen, to a less comfortable little face mask. That has helped. And x-rays of her chest (anyone keeping count of the # of x-rays here? Sonys going to start to glow in the dark) did show that she has fluid in and around her lungs (what it can't prove or disprove yet is whether she's fighting off pneumonia as well). So as long as her blood pressure stays strong, they can use lasik and other diuretics to continue to draw off the water in her system, and hopefully help the lungs clear. That's been the past two and a half days........kidneys are still working very well, etc., etc., but these are the kinds of complications that can crop up as you respond to one issue, only to have other problems arise from that correct initial response. Hopefully over the next few days all this will just be last week's problem; I know better than anyone how strong she is, and I think she's going to overcome this bump in the road just fine. -- Paul

Week Five!!! My How the Time Doesn't Fly!!!

Well, here we are at Week Five....it's been exactly five weeks since Sonja was airlifted up here to Strong Memorial from Ithaca....and it just seemed like a little celebration was in order!! So everybody now, grab a cold one!! Put a little Ensure over ice, and lets toast all the good times...oops, careful now, bring that IV pole with ya!! There you go, that's better!! Altogether now!! Hip hip, can't pay!! Hip hip, won't stay!! Hip hip, outta my way!!!!!

You'll have to excuse me if my sense of humour is a bit blacker than usual today.

I think I'm just feeling the natural letdown of coming through that period of waiting and hoping for Sonja's organs to all come back online, all I've thought about really for the past month plus, and now that they have, some non-rational part of my brain is ready to just, well, go home. I mean, she's better now right!!?? So, Ill go get the car while you collect all her stuff.......yeah, well, buckle up, buckaroo, because the rides not over yet.

And I've taken the liberty of including this little personal rant and promo for the worst tasting, fake-milk-shake-cum-protein-medicine god ever created in part, because I'm still frequently asked by friends and family and loved ones the inevitable "How are you doing?" question...which is generally just too complicated to answer in two or three quick sentences. So with your general indulgence, I will from time to time include in this space a thought or two about my general experiences here at the Medical Big House. I hope it may be of some small interest to you all, and if not, feel free to skip the part in blue ink!! And now, back to our regularly scheduled update.


So...........it's been a few days. When we last spoke, Sonja was preparing to move into the PCU for the second time, and we were celebrating the genuine good news of her kidneys starting to improve. The good, no, the great news is that that progress has continued and her kidneys are doing better every day. Their return to function has allowed the team to put her on a med called Lasik, that helps her eliminate all the excess fluid in her system through urination. So she has been urinating buckets, if that is the correct medical term, and it's had a great impact on her systems overall.

She continued to suffer from episode of "sundowning" Sunday and Monday nights; she was disoriented and confused, and would awaken in the grips of general anxiety attacks throughout the night. By Tuesday eve she turned another corner (perhaps because the antibiotics had more fully dealt with last week's infection...hard to say), and slept through the night. Same again last evening. That's been wonderful, though we are still struggling with getting her to eat anything solid, and to get strong enough to do more serious phys. therapy.....I know, all in good time.

Today's excitement came when, after being up in the Stryker Chair (this wonderful device that flattens out like a bed to allow a patient to be moved onto it, and then re-shapes itself into a chair) for about 2 hours, she started complaining of serious stomach pain....a pain that wasn't going away after some time. Now for any of you who remember Sonja's last hospital adventure 10 years ago in Montgomery, it all stemmed from a burst divurticular abscess, a perforation in her small intestine. So this morning when she started holding her stomach and crying out in pain, my already hyper-active imagination immediately ran off down that dark corridor of familiar anxieties. The happy ending to the story is that we found that the race-car-like security belt that keeps the patient in the Stryker had somehow slipped too low, and was now pressing painfully into her abdomen. Problem solved, smiles all around. What's for lunch??

So the bottom line is that she continues to do well, and the new challenges are about gauging and better understanding what this next stage of rehab is going to mean specifically for Sonja. Everyone's body reacts differently. So it's going to be an interesting couple of weeks here!!

Meantime, hope this finds one and all happy and well, and more should follow shortly. Take care, and as always. love from us both!!

-- Paul

Moving Day.....Again.

So......many of you will have gotten this past week's update, so some of these details will be familiar. But here goes anyway....

The best news is that her kidneys seem to be slowly but clearly recovering. We hope they'll recover fully (that's one of those things, given their inability to determine the original cause of her crisis, that we'll just have to wait and see on), and the prospects for that are good.

As for the rest, her liver numbers, miraculously, are almost back to "normal", and a recent echo cardiogram revealed no new causes for concern, as well as indicating that her basic heart functions were strengthening. Her breathing is somewhat labored, but as she hasn't had dialysis for the past 6 days (and won't now again, short of an emergency; all part of the effort to reboot her kidneys), the fluids have built up again in her body and that just makes it more difficult to breathe. Over the next few days they'll start her on medication to address the fluid issue. So basically all good.

Her spirit is very good, though she still struggles with context; her sleep cycle is shattered, so time has little or no meaning to her, and referencing the simple details is still tough (city, state, month, who's the President....although I always half expect her to laugh us out of the room in disbelief when we remind her that the answer to the last is W.). The early morning hours are the roughest, when she's still likely to suffer panic attacks about where she is and what's happening to her. And the relaying of specific information can be tough; she wants so badly to be back at home in Ithaca, that when you detail a rough plan over the next few weeks for that happening, she'll nod and then suggest that what we should do this afternoon is "...just go for a long walk with the dogs and then take a nap". The good news is that all of this disorientation will slowly fade away once she's stronger and more physically on the mend with her rehab. And that will be really terrific.....

And today is a big day for us once again, as we'll be moving at some point back to the "step down" unit, the PCU, where we started out over a week ago before the last mystery infection. She's nervous about the move, but the nurses all know us there already, I'll be with her throughout the day and night, and so it shouldn't be bad once we get there. And then tomorrow I'll be back in Ithaca for the day, picking up my (happily) pretty light teaching responsibilities at Cornell (one class, Mon. and Wed.).

And that's pretty much all for now. Hope this finds all of you happy and well, I'll post again soon, and as always, love from us both!!

-- Paul

Good News.......

Happy Halloween to one and all. As Yoda might say, "This day better was for Sonja!!"

Today was, in fact, a much better day. Apparently the antibiotics that we went to yesterday morning have worked, and her blood work is indicating that the infection is on it's way out. Unfortunately, we've still no idea where it came from, or what part of her body it sited in or affected. That's ok...."better still better is".

Replaced the feeding tube (thin and not painful) down Sonja's nose in order to help her ingest enough contrast fluid to light up her intestines for another cat scan. The point here was to double check again that the diverticular abscess and consequent perforation of her intestinal wall that she suffered 10 years ago (also on Halloween...that's a little spooky) had not in some way occurred again. The test came back negative.....so that's not the problem (assuming of course that the scan was fully accurate....10 years ago we were 4 cat scans into the problem before it finally showed up in another, separate test). We're still in the ICU, but that could change with a move back to the step-down, Progressive Care Unit as early as tomorrow. We'll see how she's doing in the morning.

So........hopefully we're back on the right track. Holding that thought, have a happy Day (or Night) of the Dead, and more to come soon!!

-- Paul

The Roller Coaster, Part 2........

Ahhhhhhhhh well. I guess the first car has the best view.

So.........the past two days have been rough. Neither of the two different regimens of antibiotics we've used to bring this fever she's had since Sat. am back down has worked, and today it became clear from her blood work that some kind of different infection is the cause. So as a precaution, she was re-admitted to the ICU (we've spent the past week in the PCU, or progressive care unit, that halfway step between critical care and a "regular" room on another floor of the hospital); we're even back in the same room as we we're last time. The doctors administered another, different set of antibiotics this morning that will take about 12 hours to have an effect, if they're going to, so we may know more by the morning.

Still no clear explanation as to the how or where or why of this infection (at least not yet), and so the door has to be left open to the possibility that this is actually something presenting itself that might have been the cause of her crisis in the first place, 4 weeks ago tomorrow. They never did determine the cause of that event, and so this could be somehow related (or be the beast itself, I suppose). Or not. We're back, I'm afraid, if only for the short term, to crossing our fingers and hoping for the best.

Her numbers (heart rate, BP, oxygenation, etc.) are stable, and her spirits are good. She still travels through Crazyland from time to time, delirium brought on by the fever, but otherwise she's hanging in there. The hope is that either this time around they'll find something significant and clearly diagnose it, or at the very least these antibiotics will handle the infection, and we'll be headed back to the PCU shortly.

Tomorrow's another day.

More to come.

-- Paul

Sunday Update....

From earlier today.......


"...it is very unlikely she'd continue to show kidney improvement if there was any new infection..."

......Yeah, well, so much for that theory. The good news is that they did find a slightly different strain of bacteria in her urine after drawing cultures yesterday. They can focus the antibiotics to address that, and by tomorrow at this time she should be much better! Her heart rate is down a bit, and she seems to be more comfortable.

A very good day after all!!!


More to come.


-- Paul

Fevers and Kidneys.........

I'm writing this on Sunday morning while Sony sleeps through a light fever and delirium.

So......the plan was to do two sessions of dialysis within a 12 hour period (usually not allowed) beginning on Friday night and continuing at 4am on Sat.; that all went just fine, but then yesterday late morning Sonja started to spike a fever again. This one wasn't as severe as the monster she had three or four days ago, but it pushed her heart rate up higher and her blood pressure as well. Not a dangerous situation, but always a little scary when her heart rate jumps and more than that, it just makes her uncomfortable and cranky (of course, I should really say "more" uncomfortable. Lying on one's back for weeks in a hospital, having someone wake you up every 2 hours to take your vitals is nobody's idea of comfort).

On rounds this morning, however, both the nephrologist (Dr. Leibman, the kidney specialist) and Dr. Kaufman, the head of the ICU, were thrilled with the amount of urine her body has increasingly produced, apparently a great indicator of the kidneys willingness to re-assume their workload. As to the fever, it is very unlikely she'd continue to show kidney improvement if there was any new infection, and the fever itself can be reflective of several other possible causes, from dialysis stress to the antibiotics themselves. It should run it's course and she'll be ok again, and her vitals will again reflect that.

Welcome to our world......life down the rabbit hole, where bad news is actually good news, unless of course it turns out not to be.

So the really weird thing is that you sometimes find yourself feeling relief and anger at the same time; relief that the news has turned out to be good or at least better than you thought, and at the same time feeling this inchoate frustration with circumstances that you don't understand in the first place and that seem capable of changing and shifting from moment to moment, in their own time and at their own rate.

Those of you who know me know that I don't think much of organized religion (to be kind); I have for some time practiced as a kind of agnostic Buddhist for that reason, a practice based on simple principles of right behaviour rather than dogma and stained glass windows. And finding oneself in this situation is a, oh, hell I don't know, a great example of practicing "not-knowing"; you can't control this whole thing, you can only do what you can do today, and try to stay open to what today actually presents, good and bad.

That is a way of praying I think, or maybe prayer in action. But certainly the whole notion of prayer, raised as I was in a strictly devout New York Irish Catholic family, is something that has now changed for me. I've learned viscerally the multitudinous ways in which prayer can be present in the room, and that's been a great source of comfort and learning.

And now back into the room is exactly where I'm headed.....more to come.

-- Paul

The Roller Coaster, Part 1

Well, it's been quite a week. Hopefully there won't be a Roller Coaster, Part 2.

Sonja was extubated on Sunday from the ventilator, and began the task of breathing unassisted. On Monday, she was doing well enough to be moved from her room in the full ICU to what they describe as a "step-down" unit; it's still on the ICU floor, but it's part of a system of progressive care that begins once she's clearly out of immediate danger. Sonja was by Monday starting to talk a bit more coherently, spending less time in Crazyland as her body continued to metabolize and eliminate the heavy sedatives and pain killers she had been on for so long. All very exciting.

Some time on Monday she started to develop a fever. By Monday night it was worse. I never did get the actual numbers on it.....her temperature here is taken in Celsius, and "normal" ranges between 36.5 and 37.5. She was in the 38's and 39's; I'll let those of you who remember that formula from Physics or Chemistry or whatever the hell it was to figure that out in Fahrenheit. Bottom line is she was burning up, and again they couldn't figure out why. Cultures were drawn to determine the nature of this new infection (assuming it wasn't just a return of whatever brought her to this state in the first place....always the worst fear), and finally by late Tuesday they discovered that several of the catheter lines she still has running in her arms, groin and chest had become contaminated by bacteria....and a healthy dose of anti-biotics took care of it. She was on the mend again by Thursday morning, and began her physical thereapy in earnest (I wasn't there for it, I'm sorry to say, as I had to be in Ithaca for a few hours that afternoon, but according to our friend Howard Kaye who was minding the bedside in my absence, she and the Physical Therapist Guy exchanged a few choice words with each other....."I think I'm done rolling over for now, thank you very much!!".....as her doctor said to her this morning, "Frustration is a good thing!!"). She's also on real food now again (if, given the nature of hospital cafeterias, you'll forgive the overstatement), and is less and less groggy/foggy/delerious as the days go on. She still has no real conception of time (or place for that matter....on Wed. morning when asked the "Do you know where you are?" question, she blithely told the nurse she was in "Jamaica!!".....then again, maybe for all intents and purposes she was).

And today, Friday, has been another good day. Her Mom comes tomorrow for a 7 day visit (breathe!), and they're hoping in the next few days to see real progress from her kidneys...fingers crossed. Anyway, we're going one day at a time; taking care of today's care and letting tomorrow take care of itself.

Thanks again to all who have been kind enough, and for so very many of you, generous enough to help us get through this extraordinay event. And to the many of you who have this week emailed and or phoned with your thoughts and best wishes, please forgive me if I haven't yet had the opportunity to respond.....but I hope you know the difference you all have made, how much it has meant and how it has saved us to know, as our friend Scott Mann put it recently, "that (we) have a small army of true friends standing behind (us) and ready to help!!!!!".

More to come soon. Love from us both!!!

-- Paul

The Two of Us.....

This photo is compliments of the multi-talented Stacy Shaw....it was taken a year or two ago at a birthday party for our dear friend Alisa Alison. I'm especially fond of it because for once, we both actually look pretty decent in the same photo! If any one else out there has photos of Sonja that you'd like to post email them to me and I'll see that they get uploaded. Love from us both!!

First Contact!!

No, this isn't one of our fur-children. Bardolph the Smilin' Dog came out of a kennel for Web-based photos, but he pretty much sums up how I'm feeling today.

Had the first conversation with Sonja today since the original crisis on the 3rd. As I mentioned in the update letter (included again below for any visitors who missed it), she came off the ventilator today, and after a pretty interesting period of singing random show tunes and swearing like a sailor, she came out of the sedation and started talking. It's pretty amazing what she remembers and what she doesn't, and what she thought she remembered happening, but I'll let her talk about all that at another time.

She's sleeping now, and still tires very easily; it'll be several days before she can stay awake for long periods or handle phone calls. But it's been such a breakthrough day to be able to communicate with her again, I just wanted to share that with all of you who've been so caring and kind throughout the past weeks. Thanks to you all, and love from us both!!

More to come.......

-- Paul



Dear Family and Friends:

Well, it's been almost a week I think since my last general update, so here goes. Apologies in advance if some of you receive multiple copies of this note; in grouping together lists of addresses, when faced with multiple possibilities I listed them all rather than leave anyone off the the list.

Sonja's made great progress over the past 7 days. Her liver has continued to rebound, her blood pressure stabilized significantly, and her heart continues to function well. The kidneys have not yet kicked back in, a not unexpected situation right now, and thanks to her BP lifting they were able to put her on the stronger, more aggressive form of dialysis.....which then enabled them to take over 30 litres of excess fluid out of her system (so imagine for a moment going out and buying 30 litre bottles of Evian, bringing them home and putting them all next to one another on the kitchen table, assuming the table was large enough....that's how much fluid, accumulated from being hospitalized without kidney function for two weeks, was drawn out of her body). That in turn has allowed her to breathe more easily, taken a tremendous amount of strain off of her overall system, and allowed the rest of her organs to heal more quickly.

The best news is that this morning her lungs were doing well enough to finally extubate her and take the ventilator tube out of her throat....an enormous relief. We'll go through some short period now of 1 to 3 days as she's monitored to make sure her breathing continues to stabilize on her own; right now she's breathing 100% oxygen through a mask. And as I write this she's still coming out of the effects of two plus weeks of sedation, but I hope to be able to have an actual two-way conversation soon! Over the course of the next week or so she'll continue to recuperate and be monitored here in the surgical ICU, as we wait to get a better idea of how her kidneys are coming along.

So that's where we stand right now. Many of you have asked about addresses to send best wishes and such; while here in the SICU she can't have any real flowers, but cards and what not can be sent either to her here at the hospital, or to our UPS Store mailbox, both listed below. I've also started a blog for Sonja, that hopefully as she recuperates she can take over herself, to which I'll be posting every two or three days.....it can also be another way for folks to communicate together should they wish to. That address is also listed below.

Thanks to all of you who have continued to respond with your love, care and many kindnesses!! With fingers crossed, I look forward to the time when Sonja can thank each and everyone of you herself!!! More to come in a week or so, take care all, and love from us both!!!

-- Paul


Hospital:
Sonja Lanzener, patient
Rm. 8.1423
Strong Memorial Hospital
601 Elmwood Ave.
Rochester, NY 14642

UPS Store:
Sonja Lanzener
PMB #162
2604 Elmwood Ave.
Rochester, NY 14618

Blog: Sonja's Excellent Adventure.
www.hellofanap.blogspot.com

The Last Thing I Remember....

I'm guessing that most of you reading this already know the general details at least of what happened to Sonja and I this past Oct. 3rd.....for those of you who inadvertently got left off of the multiple email lists I've been compiling, I've posted the original email I sent five days ago (on Oct. 14th) down below this first installment of Sonja's new blog.

The idea behind this elementary attempt at said blog is to create a place that I could post to every other day or so in the short term, a place where folks could check online in their own time to see how The Sonj is doing. Hopefully as she continues to improve and eventually gets off the ICU, she can use this same forum as a system for describing what the experience has been like for her, from her point of view. It should also be a place for contributions from friends and family, and a place to upload some photos and stuff as well.

So that's the plan. If anyone has other ideas to enhance this little project, by all means let me know....I'd love the responses.

For now, she is improving every day, and I hope to get a general update email off to everyone by early next week. Thank you all again for your outpouring of love and support; it has meant more to Sonja and me these past few weeks than you can ever know.....

Love from us both!!

-- Paul

"Dear Friends and Family:

First of all, I hope you'll be able to forgive the need to send this kind of information out through an email; I dearly wish I had the time and energy to contact each of you personally and speak with you on the phone about it, but that is simply not possible. And for some of you this will serve more as an update to what you already know, since circumstances have allowed or demanded that I contact you first. For the rest, again, my apologies.

Sonja is very, very sick. Happily, her condition is improving, though we are not out of the woods yet. Here's a brief explanation of what occurred.

On Tues. the 2nd of October, Sonja was admitted to Cayuga Medical Center in Ithaca, NY; we were both hired this past spring to teach at Cornell Univ. this academic year as part of their resident professional teaching associate program, and have been happily doing just that since Aug. 20th. For the last two weeks of Sept., she had complained of occassional shortness of breath, but never with any pain attached. We discovered on the 2nd that she ws suffering from atrial fibrillation, or irregular heartbeat. She was admitted to the ICU simply as a precaution, and held overnight for monitoring, to be given a heart catherization the next day, Wednesday, in the afternoon some time. I was with her throughout the day on Tuesday and Tuesday evening, and she was nervous but otherwise fine.

At approximately 6am on Wednesday morning she suffered sudden and catasthropic heart failure. Her blood pressure crashed through the floor, and her internal organs suffered severe shock from this signature event. They managed to save her (had she not already been in the ICU it is unlikely that she would have been in a position to survive), though she continued to fail and become increasingly unstable through that day and Wed. night. For the second time in 24 hours, the doctors feared that she might not be strong enough to survive the shock her organs had sustained, but somehow she pulled through. the next day, on Thursday the 4th, she was air lifted by helicopter (a story for another time) to Strong Memorial Hospital at the Univ. of Rochester in Rochester, NY, a teaching facility with the necessary resources and medical sophistication needed to treat her condition. She was admitted to one of the ICU's there, and after getting help for our animals and throwing some clothes in the car, I followed after, doing the short one and a half hour trip in about sixty minutes. She remains in the ICU to date, her tenth day in Rochester. Chronologically, she remained unstable until Saturday the 6th, when she seemed to begin to turn a corner, and her liver, lungs and blood pressure began to slowly rebound from the crisis event.

To begin at the end then, we still don't know exactly what caused her heart to fail on the 3rd. The doctors have ruled out other cardiac related causes, and the good news is that her heart seems to be functioning normally under the circumstances, aside from the continued, now-controled a. fib. When her system went into shock, her liver, lungs and kidneys were severely impacted. Happily, her liver seems to be rebounding, and to date shows no signs of any original or congenital disease....and so it was not the cause of the original crisis either. More good news; the progress that began, very slowly, on Saturday the 6th has continued. Her lungs have begun to re-engage, and while she is still intubated, her breathing function assisted by a ventilating machine, she is much closer to being able to come off that apparatus and breathe on her own. When that finally happens, they will be able to slowly bring her out from the sedation that she has been under since Wed. the 3rd, and she will finally be fully concious and able to communicate again, something that has not been possible since mid-day on the 3rd. Her blood pressure has stabilized and is now self sustaining, no longer supported only by an extensive regimin of drugs. Her kidneys to date have not yet returned to functioning, though I am told that that is not at all unusual; after this kind of event, the kidneys are often the last remaining set of organs to re-boot. She is currently undergoing successful dialysis, and that will continue for the short term.

The best guess at this point is that she entered the hospital in Ithaca not only with the atrial fibrillation, but also carrying some kind of ongoing infection somewhere in her system; that infection somehow, Wed. morning at dawn, engaged with her heart, causing it to fail, then causing her blood pressure to plummet and causing the overall catastrophic shock to her system. To date, they have not been able to pin down the specific kind or type of infection, and so we are forced, despite it's likelihood, to leave the door open to other, more episode-of-House like possibilities for what caused her heart to fail. We may never know exactly what event or combination of things caused the crash. Happily, she continues to slowly improve, and right now that alone is everything.

I have been staying, thanks to the kindness of Skip Greer and Mark Cuddy and all the good people at GEVA Theatre Center, in their actor housing, right downtown and a short ten minutes from the hospital. Our pets have been taken care of by a whole host of truly wonderful people in the Dept. of Theatre, Film and Dance at Cornell (Jenny and Don Tindall, Pam Lillard, and John Hertzler notably among them); our new family at Cornell have embraced us throughout this terrible event, and enabled me to do what I needed to do for Sonja, when I needed to do it. I will never be able to thank them all enough.

So..........please feel free to contact me if you have any further questions (email is probably the best form to do it in, though I am never far away from my cell phone). I hope this email answers some of the questions and rumours that have been arising, and I will strive to keep you all updated on her condition as time goes on. Thanks to you all in advance for your prayers, meditations, best hopes and love. It has meant more to me over the past 12 days than you can ever know, and will mean much more to Sonja as she struggles to recover. Love to you all....

-- Paul"