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