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