Book of Mirrors

I'm making this post just as much as a note to myself, and because typing out my mom's condition over and over again has gotten surprisingly exhausting, and maybe if I keep something on file here, I can do a lot of copy/pasting and editing as things happen, and I'll have it in one place for posterity. So, just assume this post has been edited multiple times for new things happening, different understandings of old things, adding things I've forgotten the first time around, making the terminology more layperson-friendly, etc..

I'm going to start from the time I last saw my mother before she got put in the hospital. It's largely irrelevant to her current hospital stay, except for one tiny little thing. Also, in the unlikely event that something comes to light later that indicates it *is* relevant, at least it will be fresher in my mind.

I arrived to their house the evening of Tuesday 09/22/2015, because Dad's birthday was the 25th. At that time, Mom was fine. The next morning, however, she was feeling ill, with nausea and vomiting, and a fever when I checked her temperature. She was a little dehydrated, based on her skin turgor, but nothing severe. We kept her in fluids as much as she could tolerate, no food, and I went through her medicines and gave her the ones I thought were most important, and that could be tolerated on an empty stomach. She did all the things one would expect, like feel awful and sleep a lot. The rest of the family was more concerned than I was, from a medical standpoint. Dad did have to be at the doctor's office for an unrelated thing of his own, and mentioned Mom's symptoms to their primary care physician while he was there, and the doctor said if she didn't get better, to go ahead and make an appointment for the following day.

The next day, she felt somewhat better, and was able (with help) to go upstairs, take a shower, etc., but we went ahead and took her to the doctor's office. The doctor did a thorough exam (I was there while he did it), calling off his findings to a staff member who transcribed it to the file, so I was able to hear everything he found. He agreed with me that her blood pressure was plenty low (I'd checked it at their house when I'd been trying to determine what medications to give her), and that her blood pressure medication shouldn't be given until/unless her blood pressure went up. Her bowel sounds were hyperactive, which was to be expected (due to her condition at the time, and her history of irritable bowel syndrome), and her lungs were clear. One of the things that had been found in the assessment, however, was that the oxygen levels in her blood were low. Not dangerously so, but certainly below normal limits. The nurse thought it was perhaps my mother's painted fingernails, but we assured her that my mother's fingernails are always painted, and that all prior readings (which had been within normal limits) had been taken under the same circumstances. Nothing was really done about that at the time, because she wasn't in any distress, and it was more of a "hmmmm... interesting... we should keep an eye on this and see if it's a fluke or not" kinda thing. I had suggested they get one of those little pulse oximeters they sell for home use, to keep an eye on it. (That's the only part of what happened during that illness that I think is the least bit relevant to her hospitalization.) But, basically, the doctor agreed with what I had already thought, which was that she had a viral illness. He gave her a prescription for an anti-nausea medication (Zofran) and had her stop in for bloodwork - a basic metabolic profile and something else I can't recall. I don't remember what the reasons he gave for drawing those labs, but the overall impression was that hey, she was in there, and given her history, it's not a bad idea to keep an eye on those things in general, so might as well throw that in while she was there. I don't know what the results were, but to the best of my knowledge, no one called saying there was an issue.

According to the rest of my family, Mom was feeling better (not perfect) over the next couple of days, including my father's birthday, which was on Friday 09/25/2015. But then Sunday, in the wee hours of the morning (I think), she apparently woke up literally screaming with lower back pain. Dad ended up calling an ambulance, and I was told they had to sedate her just to get her in the ambulance, she was in so much distress.

Now, my mother has a history of multiple lower back surgeries, and has a bunch of hardware in her back. I've seen the x-rays. My father can rattle off the number of screws and other equipment in her back, but I don't recall them. She also has polymyalgia, a history of carpal tunnel syndrome (which had been dealt with with surgery), and has had a knee replacement. So she lives with chronic pain. She had recently been to the doctor to talk about improved pain control, because the pain had become more and more debilitating. The doctor she spoke to added Lyrica to her regimen (which I believe consisted of tramadol and Celebrex, or at least those were the pain medications [besides Lyrica] that were in her pill box when I was there), which seemed to really help her, but was also having an increasingly sedative effect as they titrated her dose up. They had backed off some and were trying to find a happy medium.

At any rate, in addition to the usual ER stuff, they did a bunch of tests on her back, to see if that was the source of her pain. And while there had been some deterioration since her most recent prior surgery, it certainly wasn't to the degree that should be causing her the pain she was causing.

At any rate, they admitted her to the hospital that Sunday. I later found out that the admitting diagnosis was bacteremia, but what I was told by family members was that they didn't know what was wrong with her, or at least that's what I understood.

I had been at work at the time of being initially told about it, and there was nothing that they could tell me that indicated I needed to go there immediately, so I finished out my work week, getting off work Monday 09/28/2015. After I'd had some food and relaxed a bit, and determined that I felt well enough to make the 3+ hour drive on no sleep, I headed off (without telling my family) to Warsaw.

On the way there, pretty much just after I had crossed the state border into Indiana, I got a text from my older sister that Mom had a kidney infection. I could have kicked myself. At my mother's age, and with those presenting symptoms, that should have been the first thing I thought of, especially as a nurse. I'd like to think that I subconsciously dismissed it, since it's a ridiculously easy diagnosis, based on standard ER urinalysis and bloodwork, and if it had been that, you'd think they would have just said so immediately. (I found out later that, apparently, the medical personnel did actually know all this, but had done a poor job of telling the family what was going on.) Anyway, a diagnosed kidney infection that was being treated wasn't cause for a visit, so after spending a little time wandering the town I happened to find myself in (Covington), I headed back home, and continued my week.

And that's how it went until Thursday 10/01/2015, with me doing my usual weekly stuff, more or less, and getting periodic updates from my family, with nothing I was told being particularly earth-shattering. A few things that happened that week are a bit too serendipitous for me to think they were coincidence. For one thing, my aborted trip to Warsaw meant that I didn't clean the house on Monday, like I normally would have, but that it got done that Thursday. And, even though I've been told by my homecare client that I can wear street clothes to work, I very very rarely take advantage of that offer, but for some reason, I did that day. So, I was ready for work, and had been just about to get some dinner that I'd already cooked, when I got the text from my oldest sister that Mom had sepsis, and had been transferred to the intensive care unit (ICU).

Sepsis is bad. Sepsis is bad for anyone, much less an 83-year-old woman with other medical issues. Sepsis is worth a 3+ hour drive to the hospital. And, whether or not it was just the medical knowledge and the reasonable fear associated with that, I had a *sense* that I needed to leave. So, I called off work, forced myself to eat something, and left. I wasn't necessarily thinking too clearly. I frequently, as I was getting ready to leave the house, had to stop, take some breaths, and take stock of what needed to happen, etc., because I was having trouble moving forward.

I cried a lot in the car on the way there. Again, whether it was reasonable fear or instinct has yet to be determined as I write the first draft of this. But I felt sure we were going to lose her. I had some discussions with Baron Samedhi in my head where he assured me he'd dress up like Saint Peter and lead her to the Pearly Gates. I allowed myself to be a basket case on the drive, so I wouldn't be when I got there.

And I wasn't. When I arrived at Kosciusko Community Hospital (KCH, to us locals and former locals) both my sisters were there, and one of my childhood friends, Cindy, was my mother's nurse, for which I was grateful. Apparently her mother, who had become a nurse later in life, had been her nurse on the medical/surgical floor. I witnessed what a good nurse my friend Cindy had become, and knowing what I knew of her mother, I was sure her mother was equally good. Anyway, I got the update from everyone.

Even though, as I write this, that was only six days ago, it seems like much longer, and it's hard for me to remember everything I was told. That's when I learned her initial diagnosis had been bacteremia, and that the doctors had in fact known about the kidney infection, and had been treating it all along. The cultures had come back from the blood samples they'd done, indicating Klebsellia pnuemoniae, and they'd changed her antibiotic accordingly (to meropenem, which I'm mostly unfamiliar with, but is apparently the end-all-be-all versus that particular organism). She'd been exhibiting some atrial fibrillation, and they were monitoring that, and giving her blood thinners (100mg Lovenox daily) to minimize it. She had been taken off of almost all her at-home medications (the only one I recall that she was still on was Protonix), including her pain medications. The slightly conflicting information I got from my oldest sister was that Mom was denying pain when she was awake, but was too restless and uncomfortable to sleep well, and had been moaning even when she was asleep. At some point, however, (I think when she got admitted to ICU) they had prescribed morphine 1-2 mg every ...4 hours, I think... as needed. From what I saw, that was pretty effective, and she seemed to sleep pretty well once they gave that. She was on 2 liters of oxygen per nasal cannula.

From what I recall, her vital signs were pretty good, other than a fever (core temperature hovering around 100.8, which really isn't that high, except for the part that she was already on antibiotics, which should have brought that down). Other than being (when she was awake) very uncomfortable and often thirsty, and wanting frequent repositioning, including getting out of bed to the chair, which she was able to do with assistance, I also noticed that her breathing was a bit gasp-y, and she used her accessory muscles a lot to do so (not a good sign). Her stomach was bloated, but it's hard to say if that was a sign of anything, given her history of IBS. However, they ordered a scan of her abdomen the next morning to see what was going on.

I was still there the next morning, and she felt well enough to eat some oatmeal for breakfast, and kept it down, and was doing pretty well (for someone with sepsis in ICU) when I left that morning to go back to my parent's house and get some sleep.

When I returned that night (Friday 10/02/2015 - at this point I'm adding dates to help me keep things straight in my mind), turns out things hadn't gone as well. She hadn't felt good the rest of the day after I left, and her white blood cell count had jumped up another 10K. They had started her on another antibiotic (Vancomycin), and had ordered all the usual tests. The scan of her abdomen showed that there was nothing wrong there (one of the staff stated that the initial scan in the ER had indicated gallstones, but with no inflammation, so they hadn't worried about that at the time - whether or not this scan showed that same thing, or if the gallstones were gone, I'm not sure). However, it did show a worsening of her lungs, with increased opacity (they had been clear upon her original admission, but had been indicating decreased function over time), indicating pneumonia, and possibly empyema. As a result, they added an antifungal to the two antibiotics she was already on. That night, while I was there, even though they'd turned her oxygen up to 4 liters per nasal cannula, the oxygen saturation in her blood wasn't staying within normal levels, even though she was breathing very fast, and still gasping and using her accessory muscles, in spite of being encouraged to use pursed-lip breathing. So, they put her on a BiPAP machine, which she hated, but it got her blood oxygen back up. She kept wanting to get out of the bed and into the chair (which she'd done once earlier in the night), but at that point, she was really too weak to do that safely, so we convinced her to stay in bed. She was constantly thirsty, so we were giving her ice chips, since we were trying to avoid giving her anything by mouth. (This was because the same scan of her abdomen had also showed a possible esophageal tear. If this had been the case, it would have required immediate emergency surgery, so they ordered another scan, which gave a clearer picture of the lungs, but the radiologist that read it only addressed the lungs, but not the esophagus. Luckily, she was presenting with no clinical symptoms of an esophageal tear, and we were all very hard put to figure out how she could have gotten one since her admission to the hospital, since it hadn't been noted in earlier tests, where it would have been seen. Both my sisters stayed at the hospital until 3am waiting for the results to come back on that, and the nurse checked several times. My sisters finally went home, and we didn't get those results until sunrise-ish time; luckily, we were right, and there was no tear.) The nurse got an order for a diuretic to help her breathing, and she had more urine output (and of a lighter color) than she'd had in the past 2 days combined. She was restless throughout the night, having slept twice, in roughly one-hour stints, until close to morning, when I think she slept for about 90 minutes, before they came in to do another chest x-ray and echocardiogram. According to the ultrasound technician, he was no longer seeing any atrial fibrillation. Because I did the overnight stints at the hospital with Mom, it's hard for me to say exactly when all these things happened... but it was sometime in the period of time from late Friday night to early-ish Saturday 10/03/2015. After the doctor reviewed everything, though, he ended up saying that she was going to have to have a scope into her lung to clear it out. At the time, he stated that it would be done under local anesthetic, and that Mom would remain awake. However, he wanted her transferred to Lutheran Hospital in Fort Wayne, as they did many more of these surgeries than KCH did, and they also had cardiologists and pulmonologists around the clock to monitor her care, whereas KCH did not. So, when I left that morning, they were preparing to transfer her to Lutheran.

So, Saturday night 10/03/2015, instead of driving to KCH, I drove to Fort Wayne Lutheran. The BiPAP machine they used was much noisier than the one at KCH, and I had a hard time understanding anything Mom was saying while she wore it, while I'd had no trouble the night before. That was really frustrating for both of us. Mom was also a little out of it, and very very restless. She was allowed morphine (she denied pain, but was constantly squirming and grimacing) and ativan to help her relax, and she got both, but they did little good. She'd settle down and rest maybe an hour after receiving it, but if something woke her up, that was the end of that, and she'd be back to being restless. In spite of the machine, she was still breathing fast, using accessory muscles, and overall just looking miserable. She slept twice, and while I knew her care was necessary, I was extremely frustrated when she was woken up to receive it. They took more blood tests (she had a central line by then, because they'd been having a hard time drawing blood in Warsaw) and a chest x-ray. They also took another ultrasound of her heart. I don't recall what all happened with the blood tests, other than her potassium was low (it had been low in KCH, too, and treated), and they treated her for that. The chest x-ray, I think, was just to get a better handle on what they already knew, see if it had gotten worse, and I'm guessing provide some landmarks for the surgeons. The echocardiogram showed not only that the atrial fibrillation was back (which they had already told us), but that she had a 30% ejection fraction. They stated they weren't sure why this was the case, except that she must have a heart attack at some point. They knew it wasn't when she was initially taken to the ER, because her cardiac enzymes had been normal at that time. It seems unlikely it was after that, either, because the heart monitors in the room would have shown that happening. In any case, something had happened at some point, and that was the result. It was somewhere in here, where the surgeon was talking to me about all this, before any of the rest of my family had yet arrived, that I found out the surgery that had been explained to me at KCH was *not* the surgery she was having. Yes, they were going to clear out her lung, and remove the infected pleural lining... but she was most definitely going to be under general anesthetic, and intubated. It was going to require an incision into her thorax, and he expected it to be a fairly long incision. He only briefly told me that it was a serious surgery, and seemed a little annoyed that I hadn't been told all this already. Between talking to the rest of my family when they arrived and some internet research, I discovered that the surgery (a thoracotomy) was ridiculously risky, even to the healthiest of patients (well... no one who needs one is particularly healthy), and she had about 3 of the extra risk factors that made it even more risky, plus her overall rapid decline in health over the past few days. But, it had been made clear - if she didn't have the surgery, she would most certainly die. If she did... well, there was still a good chance she'd die, but the surgery offered her the only chance at survival.


Because she'd been so restless overnight, the surgeon opted to put her under and intubate her early, so that her body could relax and get some rest prior to the surgery. And, while it's never fun to see your loved one with all those tubes, it was certainly a relief to see her body in a relaxed pose, and breathing easily for a change. She was already under when my father and sisters arrived, although I'd been prompted to tell her that everyone loved her before it happened, and of course I did. So, they took her down to surgery, which was supposed to last 2-3 hours, and we went into the surgical area, and waited. A nurse came out about an hour into the surgery, told us it was going well so far, and that it would be at least another hour. So, we continued to wait. And wait. Almost 3 hours later, we got a call from the medical/surgical intensive care unit about something, and we found out that she'd already finished surgery and had been transferred back to her room almost 2 hours prior. Everyone was extremely apologetic about this, gave us some gift cards, etc., and the surgeon said he hadn't been able to find us (even though we were one of two families in the surgical waiting area) when the surgery was over, etc.. At any rate, though, the bottom line was the the surgery had gone off without any complications, and she was doing as well as could be expected. They would leave the ventilator on for 2-3 days, during which they'd keep her sedated and on heavy-duty pain medications; and she had chest tubes (3) that would stay in for about the same length of time. I went back to my parent's place to sleep after all that, and slept for about 4 hours before heading back to keep watch over her again at night.

I returned Sunday night 10/04/2015. The night was primarily uneventful. I'd been told there was some talk of removing the tube, but that didn't make sense, and was not confirmed by the medical staff. Based on her various lab and diagnostic tests, as well as post-surgical protocol, she was receiving antibiotics, anesthetic, analgesics, diuretics, potassium, acid reducers, and IV fluids, as well as "food" through a nasogastric tube, and blood sugar checks and insulin as needed. (My mother isn't a diabetic, but various things can mess with your blood sugar under these circumstances, so they keep an eye.) They were delivering oxygen at 40% via the ventilator. (I asked about this, since I'm used to thinking of oxygen as a unit of liters per minute. Apparently 40% is somewhat comparable to 4-5 liters per minute. I asked if it had anything to do with atmospheric oxygen percentages [which I thought were 26%, but I was corrected that they were 21%], but I never really got a clear answer on that. I got the impression that that particular respiratory technician was a new graduate, socially awkward, or both.) I believe that was the day I found out her white blood count had dropped drastically (I forget the numbers) - it still wasn't back to normal, but it was MUCH better. For the most part, though, they just kept her under sedation and kept an eye on her.

Monday night 10/05/2015 was much the same, with pretty much the same thing being done. It was at that point that I found out the chest x-rays weren't clear, and we'd thought they were after the surgery. Granted it might very well have been that we were told they were clear, but that "clear" should have been interpreted as something more like "as clear as we could possibly expect them to be under the circumstances, and certainly much improved since surgery". That was a little worrisome. I forgot to ask about her white blood count. The antibiotics were changing now and again, but that was primarily because of the post-surgical protocol for that particular procedure, and she also remained on the original Vancomycin and meropenem the whole time. I reported all this to my dad and oldest sister when they got there in the morning, and said that we needed to find out what her chest x-rays looked like over time, because it was unclear to me if the surgery had actually improved that outlook or not, and that was pretty important to know. I had noticed when I first walked in that night that the oxygen saturation in her blood, while within normal limits, was lower than it had been, and I asked if they'd turned her oxygen down, which they apparently had, to 35%. At some point during the night, the saturation dropped, and in spite of all the usual things they did to bring it back up, eventually, they turned the oxygen back up, but this time to 50%, which brought the percentages back to within normal limits, although not as much as I would have expected. I should also add that both nights, she was reacting when they moved her around and did treatments on her, opening and blinking her eyes, moving her arms/hands and feet. However, she couldn't do any of those things on command. I was told that, however, during the day, they had shut off the anesthesia for a little while, and during that time, she'd been able to do all those things on command, including differentiating between her right and left foot. While I was there, and she had her eyes open, she couldn't move her eyes to track anything... but it was obvious to me that there was cognizance behind her eyes.

I returned Tuesday night 10/07/2015, which is when I'm writing this first draft, although by now, the clock has gone past midnight, and it's technically Wednesday 10/08/2015. My father had said that when they stopped the anesthesia during the day this time, she hadn't responded as easily to commands. When I asked the nurse about her white blood count, she stated it had gone up, not quite by 1000. I did ask her to go over the chest x-rays from the time of her admittance to this hospital, which she did, but even so, the level of improvement was unclear to me, since there were no measurements given that I could easily say whether the areas of opacity had gotten better or worse. Based on my interpretations, it seemed like worse, but the nurse said that her impression was that there had been improvement, and since she's more used to the syntax of the radiologists in the hospital, I'm guessing she's probably right. Still, though, I wonder. The surgical dressing was changed, and the nurse said it had been a little red, but otherwise looked good. Everything else is roughly the same, medically. She's still opening her eyes during treatments and such, and there's still cognizance there, but it's not as much as the night before, like she'd clouded, for lack of a better way to put it. She's not as much "there" as she was yesterday, and that worries me. EDIT: AM bloodwork is back. Her white blood count has gone up about another 1000, same as yesterday, and her hemoglobin has gone down, although not really significantly. No results from chest x-ray as of yet. I've been talking to her when I enter and leave the room, watching her eyes, and I'm having a really hard time telling if she's all there. Her stare is more blank than yesterday, but when I tell her things, there seems to be a ...closure? in her expression. It's hard to explain. Like she had been wondering about something, and I had satisfied that curiosity. I also notice the edema is increasing every day.

I'm going to stop writing this now. That's as much as I know so far. I'm going to go back when I edit this and add hyperlinks to all the medical terms that I don't think non-medical people will be able to grasp right away. But typing all this out, trying to remember everything, etc. has been kinda taxing. More as I learn it.

EDIT: Night of 10/07/2015 (copypasted from Facebook) - OK, here's the update on Mom.

Her white blood count, which is an indicator of infection, has risen about 1000 points each day since her surgery. I talked to the surgeon about that this morning, and he said that, in the absence of other clinical signs (high temperature, infected-looking drainage, etc.) that it's very likely just indicative of the body's general inflammatory response after the surgery. I also talked to him about the increased edema (swelling) to all her extremities, which has gone up daily. He said that this wasn't uncommon post-surgically either, especially since we've kept her flat and sedated. They're trying to manage it with diuretics - it's just that when you add a diuretic, you start a dance that includes potassium levels and blood pressure - both of which they're monitoring and treating accordingly. I also asked him about her chest x-rays, which, when read aloud, kinda sound worse to me, but he saw the actual films, and said they definitely look better.

So, those are all good things.

When I came in tonight, her edema is less, which is also good. Her eyes were a little ...clouded?... last night, whereas they were bright the night before. I'm not saying that right, but it's hard to describe. More that two nights ago, I could tell by looking in her eyes, even though she couldn't move them to look at me, that her mind was behind them. Last night, that was more difficult to see. Tonight, however, she seems more "there" again. The nurse said she was back to being able to wiggle her toes on command again, and she flicked her eyes towards me when I talked to her. She still couldn't look directly at me, but it certainly looked like purposeful movement to me. They've been decreasing her anesthesia slowly, but keeping her pain medicine up, and she doesn't appear uncomfortable. They're going to do a trial tomorrow where they leave the ventilator tube in, but she how she does without the oxygen (which is currently at 35%). The doctor said not to be surprised if she failed to do this, and I got the impression that few people managed to do it the first time.

Her hemoglobin and hematocrit (red blood count indicators) are a little low. That's a new finding, so we're just watching that for now, and we'll see what it does tomorrow. Certainly it's not unexpected post-surgically.

So, that's where we're at, and it doesn't look too bad right now.

EDIT 10/09/2015: As of the morning of 10/08/2015, the doctor said her lungs still seems to be improving according to the chest x-ray (they're doing those daily), her red blood indicators are holding steady, and her white blood count has gone down about 1000+. Later that day, they did a trial without oxygen, but she was only able to be without it for 30-60 minutes (Dad couldn't remember which). I left for home (Champaign) after the doctor's visit, so everything is now from verbal/text/etc. reports I'm getting.

Today, Friday 10/09/2015, Dad said they did another trial without oxygen, with similar results. Apparently none of the family was there when it happened. So, they ordered a CT scan of her entire body to see what was holding up progress. My sister just texted me and said the scan didn't show anything. She also said they took another lung culture, to make sure it was still the same organism, and they were using the correct antibiotics. That information won't be back for 2-3 days, as is the nature of cultures. She also said they mentioned empyema again. Apparently, this is the first time the rest of the family had heard this term. I explained to her that this was the original problem she'd had, causing the surgery to begin with. However, if they were now saying she had a *new* empyema, the only treatment would be another surgery of the same kind, or a scope/suction down into her lung. Right now as I type this, it's just an hour past shift change at the hospital she's at, so I don't want to call the nurse for an update just yet. I'll call later and see what's said.

EDIT 10/09/2015: I did call and talk to the nurse. Mom's white blood count is down slightly, her red blood count indicators are holding steady, and her lungs seem to be no worse. She agreed the CT scan showed nothing significant, and said that, as far as she knew, the empyema they were discussing was the original one, not a new one.

Another thing I want to add. My oldest sister I were talking, as I was about to leave the hospital and head back to Champaign. During the conversation, something go me to thinking, and it occurred to me (and I told her), that Mom must have had a heart attack sometime between her most recent visit to her primary care physician (when her blood pressure and oxygen saturation in her blood were low - just as you'd expect if there'd been damage to the heart muscle), and the prior visit to her primary care physician, whenever that was (since according to the nurse that did her vitals at the most recent office visit, the low numbers were a change from her prior appointment).

Given my mother's history of chronic pain, multiple surgeries, and tendency to sleep a lot and sometimes feel weak and awful as a result of the polymyalgia, not to mention the addition of Lyrica to help her pain... she could have very easily had a heart attack at any point that was masked by all those other issues.

As far as I can tell, it's her weakened heart that's making the transition off the ventilator so hard. It's difficult to maintain oxygen saturation and blood pressure when your heart is only working at 30% capacity.