I just posted a story for the first time to my beautiful new account at Archive of Our Own, which as previously mentioned, is now in Open Beta. If you want an account of your own, why just head on over and put your name in the queue.

What did I choose as my debut story? Why, of course, "The Chicken or the Egg".

I have also contrived to create a text document of the same story, with line breaks and without smart quotes. This involved using some very detailed instructions (with screen captures!) from tree and, I have to admit, a certain amount of ad-libing by me. As soon as she reassures me that I haven't messed it up entirely, I am going to post the story to Ephemeral, which will automatically post the story to Gossamer! After this, there will no excuse for the rest of you hold-outs. It took me two months to figure out how to down-load an icon, so if I can do this, anyone can do this. Of course, I haven't done anything yet, except create a weird-looking, columnar text file. But you know what I mean.

It seems that on the eve of the demise of geocities, back around the 20th of October, an internet denizen, jmattheij, decided to try to save the whole thing. The saga of how he tried to do that, is pretty fascinating reading, as is the result: two million accounts were saved before Geocities went dark.

Let's say you want to see if a particular story is available now on ReoCities, all you need to do is type in the old url, and substitute an "r" for the "g" and voila, there is your new page. Maybe. All of the pages aren't back up yet. Geocities was pretty big, after all. What is more, he wasn't the only individual trying to save large numbers of accounts. I have no idea if Reocities will be any more reliable than the Internet Archive but, hey, it is always good to have options and back-up for our beloved fan fiction sites. So thank you, jmattheij. And thank you, tree and idella and mimic117 and bellefleur and amyhit and everyone else who helped save sites and move fan fiction to brand new homes.

I just got off the phone with my son. He is withdrawing from U.C. Davis, and as soon as he has found someone to take over his apartment lease, he's coming home. He's been on academic probation since last spring and, frankly, has been struggling ever since he started his engineering coursework. His midterms did not go well and he feels like he is just wasting our money. He has decided to look for a job, and save some money, so that if he ever does feel like he wants to go back and give engineering another shot, we won't have to pay for it. He does have an economics degree from U.C. Santa Cruz, which we paid for completely, so at least he has no student loans or debt of any kind.

Although I would never ask him to come home, and feel disappointed for him that he is not doing better in school this year, I admit the last few weeks have been difficult for me and even harder for Kyle. Having James home now would be a comfort to us both. Plus, our son has always been very close to his grandfather and I know he has been worrying about him ever since the stroke.

No matter what happens, no matter what the future may bring, I know we can get through it together.

As of Saturday afternoon, I have an account at the Archive of Our Own which is now in Open Beta. It certainly didn't take long to get through the queue, much less time than the five or so days I was told to expect. However, the site immediately froze, which meant I couldn't use it until Sunday. Well, these things take time to sort through. Theoretically, uploading the fic should be easy as pie: just cut and paste the html file and push play. There are some cool features, like you can bookmark fic you like, or just want to read later, even if it isn't in the archive, which is a great incentive to get an account, even if you don't plan to archive fic there.

I know I keep saying this, but I do still need to learn how to post the relevant stories to Gossamer (the big fic archive for The X-Files). I have promised myself that the season two novel of doom will get posted there, one way or another, assuming it gets completed. Not doing Yuletide, unless I get to do a pitch hit, theoretically leaves me with some time to work on it. I have a complete first draft, I even have chapters one through six (or was it seven?) typed into Word. Now, I just need to find the time to type in the rest, and revise it--again. Until you have attempted a long fic, you have no idea how difficult putting one together really is. I am in awe of writers who have done it and done it well.

The cable guy came out and hooked up my new DVD/VCR to the cable. As it turns out, I didn't need adapters, I just needed to use the ones they sent in the box, plus some other cable the cable guy supplied. But when he went into the menu, he set something up oddly because now the words "Video 1" and "3" never disappear from the frakking screen, which makes me a little bit nuts. Now I am going to have to go back into the menu to shut off whatever he turned on and hope it doesn't ruin something else. Or, maybe it's the player itself? I never had to switch my old one into Video 1 at all, I just turned it on and it played. Anyway, I forgive him because he lost his wallet at his last stop and then he had an allergic reaction to my cats, so he was pretty distracted. I actually had to give him some Claritin, he was that congested. Happily, other than the glowing green letters, the picture looks great--it's like getting a new set. Who knew what a new of cables could do for an old set?

I haven't run a fever for more than 24 hours so I think I am okay to go see D__ today. Kyle, who has been going without me, says his dad seems to just sleep and sleep. The Rehab called and said that Dr. Evil wants to put him on an antidepressant because he is so agitated, which doesn't exactly add up, does it? Did you know that Zoloft has a major interaction with fleets phosphosoda enemas?

They are already sending us bills, too, asking us to pay for his care through the end of this month. Even though Medicare will pay for twenty days of rehabilitation, his Advantage Plan only pays for ten, so for the next however many days they allow him to stay, he has a one hundred dollar per day co-pay. Some advantage, huh? Of course, that's nothing compared to what it will cost when his Medicare days run out or they inform they will no longer pay because he isn't "progressing," whichever comes first. Kyle has made an appointment with the social worker for Wednesday to discuss our options. The average cost of a nursing home in the USA is sixty thousand dollars a year, so I am imagining it will be considerably more here in Los Angeles. The good news is he does appear to have some resources. The bad news is we will begin depleting them at a pretty rapid clip in a matter of days.

What a week this has been. Tuesday night, I was so exhausted I fell asleep at 7:30 p.m. with the lights still on. I woke up the next morning feeling kind of achy, so I took some extended release acetaminophen, reasoning that I must have forgotten to take it the night before. But it didn't help the pain; in fact, by noon, I was feeling so sick that I put in a panicked call to my doctor's office to get an appointment.

I checked my temperature every two hours, and resolved to only take more fluids, use my inhalers and rest, reserving the drug options for fever more than 102 degrees F and severe body aches. Fever is part of the body's immune response to infection and in my humble opinion should not be automatically treated as a problem. My fever peaked at 101.3 and never went any higher; by eight o'clock that night, it was down to 100 degrees. I felt so much better by Thursday that I canceled my doctor's visit, reasoning that the time might be better used to treat someone sicker, plus I might catch something worse in the waiting room. My chest feels tight but not congested. Since I'm not coughing, if my fever remains normal, I think I can go back to work tomorrow. If this was H1N1, it was certainly a very mild case. Maybe what I have been reading in the media is true: people born before 1955 do carry some immunity to this virus.

Normally, what I would do when sick is sleep and/or watch television but since my DVD/VCR broke last week, and I can only take so much cable television, I resorted to reading fic. I tried to read some of the Big Bang stories in both Trek and XF, but my brain was not working well enough to process anything new. So, after a couple of false starts, I finally reread Iolokus, Books 1-4, which is the fic I posted to xf_book_club back in October. Kudos to the people on my flist and in that community who went ahead and had a rip-roaring, highly entertaining discussion of the story without my having to even show up. Obviously, I wish I had been able to do so but Real Life has taken over in a Real Way. I suspect my ability to moderate, let alone participate there, will be limited until things with my father-in-law get sorted out.

We finally got the letter from the doctor, stating that D__ is unable to manage his own financial affairs. This responsibility will now fall to Kyle as well, which is a huge burden on top of everything else he is dealing with now. He will need to find out what his dad's financial resources are, besides the house, and his pension. There is a trust but what exactly is in it is the one of the questions he will have to answer. The other is will it be enough to help us provide for the care that D__ will need for the rest of his life.

In other news, I missed the sign-up for Yuletide. I am not that sad about this because, quite honestly, I couldn't think of anything to ask for. Last year, two out of my three requests were written, and written well, and if that weren't enough, I got another excellent story written for me as a gift. This year, I'm just going to try to write stories for other people, without expecting anything in return. To that end, I signed up to do pinch-hits. The first three requests have already been sent out so I replied to one of them. I probably won't get it, but maybe next time. Also, if there is anyone on my flist who needs technical beta, I am actually pretty good at spotting the problems in other people's writing. I had to stifle myself from writing to Rivkat and Mustang Sally about the typos I spotted in Iolokus. Hey, I would want to know.

First, I have some good news. idunnoh does not have cancer. Yesterday, at his post-op visit, we found out that he has severe dysplasia and chronic inflammation on one vocal cord, mild dysplasia on the other one. Can this condition progress to become cancer? Yes, it certainly can, just as it did with the chronic inflammation of his esophagus fourteen years ago.

Ironically, the surgery that cured his cancer then is what is causing the problem with his vocal cords now. We now have to figure out a way to stop this problem from getting worse by (1.) controlling the acid that is the source of the inflammation and (2.) keeping it from refluxing up and bathing his larynx in digestive juices. Eliminating caffeine, careful eating practices, and losing some weight will all be helpful in meeting those goals. At home, he has slept on an Electropedic bed at a 45 degree angle ever since his cancer surgery in 1995. Unfortunately, traveling is going to become even more problematic, as he can no longer risk sub-optimal sleeping arrangements. Still, this feels like he is getting a second chance.

The other news is not so good. As I suspected he would, on Monday, my father-in-law did fail his swallow study. After hours of negotiating and haranguing, in between trying to care for my own patients, I got a text message from Kyle. Jennifer, the case manager for the Medicare Advantage plan had called Kyle at 4:45 to leave a message that the gastrostomy tube would be placed on Tuesday, that D__ would be leaving the rehab facility by ambulance at 9:15 for the procedure at noon, and that a family member would need to go with him to the hospital. This left us in a quandary, as Kyle's follow-up appointment with his surgeon was scheduled for 10:45. Since there was no way that could be rearranged at such short notice, I called and left text messages for Kyle's sister, brother-in-law and nephews. No one was able to be there with D__. Seeing my distress, a friend and colleague volunteered to go with D__ to the hospital and stay with him, so that we could leave and keep Kyle's appointment.

Finally, I left work about 8:00 p.m. and somehow managed to get lost driving to the rehab facility. Long story short, a kind person stopped at the corner of San Fernando Road where I was frantically trying to describe my location to Kyle via text message, and told me how to get back to the freeway off ramp I had missed. It was now after nine o'clock so the facility was locked up tight but the nurses buzzed me in the back entrance. I walked into D__'s room where Kyle was waiting at his father's bedside.

"Can you tell him about the swallow study and the tube?" Kyle wrote in his little notebook. I said I would try. D__ was sleeping soundly and I didn't want to wake him. Wendy's first rule of good nursing care: never wake a sleeping patient for any reason unless by not doing so, you would compromise his care. Hospitalized patients get woken up over and over: for doctor's visits, for lab tests, for repositioning, for medications. Right on cue, a young man walked in to the room, carrying a large box of equipment.

"Bed A, Bed B, Bed C?" he asked, pointing to the three patients in turn.

"This is __," I replied, stating D__'s full name aloud. "Who are you and what are you here for?"

"I am here to draw his blood for a protime level." This made sense to me as D__ has been on blood thinners since even before he had the stroke. The doctor would not want to place the gastrostomy tube unless his clotting time was within normal range.

After the phlebotomist was done, I told D__ about the results of the swallow test and the surgery planned for the next day. He was disappointed, of course, but I tried to stay positive. Maybe he will eventually be able to eat and drink again. Kyle left about 11:00 p.m.; I stayed until about midnight, talking to him and giving him the moistened swabs when he asked for water.

Tuesday morning we arrived bright and early at the Rehab to tell D__ again why he had to have the tube placed. "At least you won't have to have the tube in your nose or need to wear those mitts anymore," I tried to console him.

"No water? No food?" he said forlornly. Again, I had to tell him no, not until it is safe.

We followed the ambulance to the hospital. As we were driving over, I volunteered that I was worried that we might not be doing the right thing in placing the tube.

"Why? It's a no brainer." Kyle insisted.

"How can you be sure this is what he would want? Maybe he would rather be allowed to eat and drink and take his chances with pneumonia," I replied.

"You mean because you would rather be dead than to live like this," Kyle spoke softly.

"Well, yes." I replied. I have been very clear about this, with him and anyone else who would listen. No feeding tubes ever. If I can't eat or take care of myself, please just let me die. Heaven is waiting.

"I will do my best to make sure your wishes are complied with," Kyle said carefully, while avoiding saying he would do as I asked. "My dad is very logical about these things. And he still might recover."

"I will haunt you forever if you ever do this to me," I insisted. "I can see I will have to leave very detailed instructions, covering every possible contingency."

Kyle started laughing. "A 500 page volume. Here, Doctor, read this. This is what she wants and doesn't want."

I laughed, too. But if 500 pages is what it takes for my wishes to be respected, then 500 pages is what he'll get.

I need to learn to knit. In my new role as part-time care-giver to my father-in-law, I have a lot of time on my hands. The problem is that the time is broken into very short intervals.

"Come on, let's go!" D__says impatiently.

"What do you need, D__?" I ask for the third time in the last fifteen minutes.

"Water! And food!" he replies.

"You aren't allowed to drink water or eat yet. Not until you pass your swallow study. You are going to have the test on Monday at Glendale Memorial. Today is Saturday, so that's two more days to go," I explain again. "I know it's hard to wait."

"O-kay. O-kay. I'll try uh be patien," he says, slurring a little.

Five minutes go by.

"Kyle, Kyle!" D__ cries out again.

"D__, Kyle can't talk to you right now. He's here but he had surgery on his throat on Wednesday. He's not allowed to speak for a week," I say in my most soothing tone.

"O-kay. That's right." He settles down.

Five more minutes go by.

"Water, I need water," he says plaintively.

"You aren't allowed to drink water yet. How about cleaning your mouth with this swab?" I hand him a swab--a small piece of sponge attached to a lollipop stick that I dipped into a solution of water mixed with Biotene mouthwash and then pressed to expel most of the liquid. If I don't, he'll try to suck the fluid off and swallow it. Biotene is for people with chronic dry mouth but it works well for people who aren't allowed to drink or eat, too. Next I apply a dab of dry mouth moisturizer to his tongue.

"Wash cloth. Wet it. Feels good." I take a wash cloth into the bathroom, run cool water over it, and wring it nearly dry, then fold it in thirds and lay it on his forehead.

I do all of these things in turn, over and over. I repeat the little speech about not drinking, not eating, and the one about Kyle's surgery, trying to keep my tone even. D__'s long term memory is intact but his short term memory--is not. This is a result of the stroke, and like all of the other deficits he has sustained, the doctors do not know when, if ever, he will get it back.

D__ was frantic by the time we arrived yesterday afternoon. He had his mitts on and was crying to have them taken off. His call light was nowhere in sight, his bed was pushed up against the wall and he was turned onto his unaffected side, facing it. Even his television was off, and pushed out of view. I took the mitts off, found the call light and pushed it. While we waited, I gave him mouth care and talked to him. After fifteen minutes, one of the aides walked in, and automatically walked to the other patient's bedside.

"No, I called. D__ would like to be turned on his other side, his back hurts. In fact, he says he hurts all over. Can you ask his medication nurse to bring him something for the pain?" The woman nodded, walked to D__'s bedside, reached under him, and flipped him to his other side, pushing the pillow up against him to keep him from falling onto his back again.

"Is that all?" she asked, rather sullenly, I thought. It took only five minutes more for Iris (not her real name) to walk in with his pain medication.

On Friday morning at 9:00 a.m., according to the Rehab, D__ pulled out his feeding tube. "Oh, yes, we tried to call you about that," the charge nurse reported, although no message was left on any of our numbers. It took until two o'clock for the tube to be reinserted. The x-ray technician didn't come until nearly 5:30 p.m. The tube feeding wasn't restarted until nearly 7:00 that evening, which meant he was without food for over nine hours. The only water he had in that interval was the little bit they mixed with his blood pressure pills and the tiny dribble I gave him every fifteen minutes on the mouth care sponge. By the time they restarted his feed, he was incoherent and frantically begging for water every five seconds. As miserable as he was with the tube, he was even more miserable without it.

That day I spent hours arguing, on the phone with the doctor and the case manager, in person with the director of nursing, that ten days was too long to leave an NG tube in a patient and that it is cruel to keep mittens on a patient who was conscious, partially paralyzed and who could clearly state his preferences. It seem obvious to me that D__ will need supplemental nutrition even once he does begin to eat: perhaps for weeks, maybe for months, maybe forever.

So why the delay? According to the doctor, the Medicare Advantage plan will not authorize, i.e. pay for, the placement of a gastric tube directly into D__'s stomach to replace the tube in his nose, unless he fails the swallow study. At the recommendation of the speech therapist, he had ordered the study and thought it would be done by the end of next week. Why not until then? Well, the doctor explained over the telephone speaker, it takes about a week to get the authorization and to schedule the test. Kyle, who was present during all of these discussions since they won't talk to me unless he's there, hit the roof, scribbling frantically.

"You can transfer a patient from a hospital to a nursing home in twelve hours when it's in your interest to do so but you can't get a test for a patient in less than a week?" he wrote angrily, shoving the paper in front of the Director.

In a way, I almost hope he does fail the swallow study because then they will be forced to place the G-tube. Otherwise, it will be another fight over whether he'll get enough nutrition once he's allowed to eat. They'll want to feed him "around the tube" until he does, thus ensuring that even if he does get to eat whatever pureed pablum they'll offer him in place of real food, he'll still have to have the NG tube in place. He'll still have to have the mitts unless there is someone in the family who is willing to sit at his bedside, watching to make sure he doesn't pull it out. They'll keep arguing that we should give him a chance, that placing the G-tube carries risks.

But my father-in-law doesn't want the NG tube or the mitts. His voice isn't being listened to, it isn't even being considered. "Who is making the decisions?" he asked me last night. My voice broke as I answered him. "Well, in a way, you are, D__. I asked your permission to replace the feeding tube and I asked if you were willing to wear the mittens when we weren't able to be there to keep you from pulling it out. You may not remember telling me that."

I am so tired already. Even with everything I know, even with all of my years of training and experience, I feel frustrated, unable to make a real difference in his care. If I feel this helpless and alone, imagine how he must feel, lying in that bed, unable to move, forbidden from eating and drinking. "You're treating him like a thing, like an object, not like a human being," I finally said angrily. "He still has rights even if you won't recognize them." After a day of argument, the best I could do was to get insurance company to have the swallow study moved up until Monday and to get the Rehab to allow unlimited family visitation to minimize the amount of time he has to spend in the mitts.

Every five minutes, he asks me for water.

Every five minutes, I have to say no.

Yesterday, during our visit, D__ seemed more alert and was able to answer questions. He asked for a back rub which I gladly gave him, and helped the aide reposition him. Naturally, the effing mitts were back on. Not only did the physician not do as I asked, which was to tell the nursing staff not to put them on, he wrote an order for them to be on continuously on both hands, even the one that can't move. The LVN caring for him made quite a fuss about it, too. I feel so discouraged. There seems to be nothing I can say or do to make these people reconsider how they are treating him. They finally got him a soft-touch call light but with the mitts on how can he even push it? We are trying to think of what to do when the Medicare Advantage M.D. wants to send him home. Right now, there are just too many variables, too many unknowns to make real plans.

*****

idunnoh's surgery went fine. The doctor took before and after pictures to show us. He took off a chunk of the bad looking tissue on both vocal cords. One section looked more worrisome than the other. The final pathology won't come back for two weeks but I hope we hear something next week at his followup visit. Kyle is home now, walking around and eating enough to make up for his missed meal. His major complaint is a sore throat and having to write down all of his demands requests rather than voice them. His minor complaint is a lack of strawberry sorbet. He has a very bad nurse who refuses to go out to fetch some from the market. She thinks he has already consumed enough sugar for one day.

I am really happy that this day is done and over with.

Yesterday morning I went to Kyle's pre-op visit with his Head and Neck surgeon. My goodness, he certainly is a congenial man. He "scoped" Kyle again, which means the doctor numbed his nasal passage with this icky spray and inserted a thin tube with a microscope attached to it to look at his vocal cords. Dr. Congeniality let me look at them, too, over his shoulder, and I must say they looked just as he described, not that I have any basis for comparison.

He told us what to expect after the surgery and updated Kyle's medical history into the computer system. Everything is computerized now at Kaiser. When he told us that Kyle wasn't going to be able to eat or drink anything after midnight and that his surgery was scheduled for 4:00 p.m., I said "Oh, no. That won't work. He'll throw up if his stomach is empty for that long." Because, of course, even if you don't eat, there is still acid in your stomach, in Kyle's case, a lot of acid. This might not normally be a problem but because Kyle had his esophagus removed, his stomach was pulled up into his chest, where it sits alarmingly close to his lungs and his larynx (vocal cords).

Now they have moved his case up to 9:30a.m. and bumped everyone else back, except one case involving a child, because children always get done first. The surgeon also talked to the anesthesiologist, who will have to do a rapid sequence induction and intubation, which is the procedure they use for people who have full stomachs, like in an emergency situation, or if they have an incompetent esophageal sphincter, which is the valve that keeps stomach contents from going down the wrong pipe and into the lungs. idunnoh has no esophagus, hence no sphincter. This is also why his throat keep getting bathed in stomach acid, damaging his vocal cords.

The surgery takes an hour and a half, he goes to recovery room, then I get to take him home. His throat will be sore so I'm going to get him liquid Tylenol and Popsicles, and maybe some throat lozenges. He is going to be on voice rest for a week, which is going to be hard. We are very verbal people. At least we can still have sex, as long as Kyle doesn't talk during it.

*****

D__'s daughter J__ went to visit him yesterday morning. I am hoping she will do mornings and I can do afternoons. I left for the Rehab after Kyle's appointment was over. The first thing I noticed when I entered into the room is that someone had put mittens on both of D__'s hands, even the hand that can't grasp anything. Either he tried to pull out his feeding tube or he actually did, I am still not quite sure. J__ left a note saying he had. When I talked with the doctor, who came to visit him that afternoon, he said he had tried to pull it out. Now, that is possible, but since I spent six days with him and never saw him do anything more than touch it, I am really wondering if they are telling the truth. It is a big deal to replace one on an out-patient, requiring transfer to a hospital or clinic for an x-ray to confirm placement, and then the doctor has to read it before the feedings could be resumed. D__'s feedings had already been resumed, so what really happened? In any case, I took the mittens off and instructed the doctor to please write an order to leave them off. It isn't right to restrain someone who is in their right mind even if they do pull out their feeding tube accidentally in their sleep. Patients do have rights although you would think just the opposite by the way some health care workers behave.

The other thing I noticed is that they had put D__ in diapers. Now, he can't press the call-button so I understand it is easier for the staff to just do it that way. But he can still tell when he needs to go, so if they get him a call light he can press, he should be able to call them. The next question is whether or not he will get anyone to show up. The elderly gentlemen in the bed next to him checked himself out yesterday evening. He put his call light on and waited for a half an hour for someone to come. I put D__'s light on, too, because I wanted help to turn him. The aide came in, saw that the R.N. was there doing Mr. Roommate's discharge, turned off his call light and then left.

When Ms. R.N. was done, I said to her, "Could you please ask the nursing assistant to come back, as I had called, too? I wanted help to turn D__." After another fifteen minutes, Ms. Unhelpful returned, saying rather huffily that she would be back at 6:00 (it was 5:55!) to turn him, since it hadn't been two hours yet. Then she marched out. The thing is he asked to be repositioned. It wasn't my idea. Can you imagine not being able to move in bed when you want to, to be dependent on others to do that for you, and then have them refuse to do it when you ask?

She finally returned at 6:30.

I keep joking about the (Harold and) Maude option, but honestly, sometimes I find myself thinking I'd kill myself before I would let this happen to me. God would forgive me, of that I am certain.

This morning, as I was getting ready to make my husband a cup of green tea, I broke his teacup. I was drying it, and it just slipped out of my hand, fell onto the floor and shattered. I burst into tears. You see, it wasn't just an ordinary teacup, it was part of a set I had bought for us for our twenty-ninth wedding anniversary. The set is called Avian Companions, and features two paintings by Bisa Lu. The first, Bluebird Trio, is a symbol of joy, togetherness and love. The second, Plum Blossom Doves, symbolizes peace, innocence and long life. Kyle's cup was Plum Blossom Doves.

****

After our appeal was denied by Medicare, it quickly became clear that Healthcare Partners was going to move D__ to a lower level of care; the only question was how quickly they would do it and where they would dump him. Given that the Medicare ratings of these facilities varied from one star (very bad) to four star (good), we needed to find him a place that could both provide him with the physical therapy and the nursing care he needed to get better.

The list of places that the weekend case manager gave us had only one place in the Glendale area on it. All of the other places were either terrible, a good hours drive at minimum from the San Fernando Valley, or both bad and inconvenient. We decided to look at Burbank Health and Rehab, the place we had rejected because of its lengthy list of safety violations, and hope that with frequent, daily visits, D__ would get the care he needed. It did seem clean and organized and had recently had its public areas redecorated by someone with more money than taste. There was a large space for the therapy he would need and there was a separate area, called a Transitional Care Unit that D__ would be placed in while he recovered.

The admissions nurse at Burbank talked with us frankly and advised us to talk with the social worker as soon as possible regarding his long-term care options. This nurse had experience with caring for a family member who had suffered a stroke, his own father, and seemed knowledgeable and caring. When we got back to Adventist, the transfer to the Burbank facility had already been arranged. What was surprising was that another transfer, to one of the bad and far-away places, had already been scheduled for ten a.m. and neither of his children had been notified. Apparently, the word has not gotten to the HCP medical group that D__ is no longer able to make his own decisions. We will have to enlighten them, both verbally and in writing. Somehow, from the time that we left Burbank and arrived at Adventist, a different transfer had quickly been arranged, which irritated the nursing staff to no end.

Since it was nearly eleven by the time the ambulance left Adventist, we decided to stop by D__'s house, get the mail and the papers and grab a bite to eat at Pecos Bill's on Victory, a tiny, one-of-a-kind eatery serving Okie sandwichs, which are a kind of a slow-cooked, buttery-soft meat, in a mild spicy gravy, served on a bun. You have a choice of Okie Beef, Okie Pork, Okie Turkey or Okie Ribs. This is messy, yummy, comfort food. The coleslaw was also good, freshly prepared and not at all soggy.

After this indulgence, we drove back to Burbank Rehab, where we signed in and took the elevator up the the TCU. Dick was in a four bed room that had been converted into a three bed room during the "renovation." It was small, poorly lit, with only a single, glaring light over his bed, and not a chair in sight for anyone to sit on, which made quite a contrast from the spacious two bed room, with the couch, large desk and computer Adventist had made available for the family to use in every one of their patient rooms. (I wonder if they would let me bring in a lamp for the bedside table?) D__ was still lying on the linen he had been transferred on, and from the looks of it, no one had even assessed him, let alone begun any care. As it turned out this was not quite true, he had been assessed by both the physical therapist and the R.N., but he hadn't been repositioned since he had arrived. This seemed odd since if I had turned a patient over to check his skin, I'd had gotten the messy sheets out from underneath him while I was at it. I called for an aide and we turned him, and got rid of the bunched up linen. There was only one pillow in the room so I asked her to bring in more so that we could turn him to his side but she brought in only one. I elevated his affected arm with some rolled up linen. The affected leg seemed to be contracting up into his body, yet moving restlessly.

His daughter, son-in-law, and two grandsons came to visit. They stayed for around an hour, but he barely seemed to be able to interact with them. Truthfully, he seemed less alert to me than he had the day before and his speech seemed less clear to me, too. I told the nursing supervisor this but I doubt that it matters at this point. Whatever changes have been occurring are not showing up on the scans. His brain has being starved of oxygen because his right internal carotid artery is completely blocked.

I asked that he be placed on an air mattress and given heel protectors to try to prevent skin breakdown. (Unless he is repositioned at least every two hours, he will get bedsores. Everyone who works in the health care industry knows this and still, our patients get bedsores.) Once that was done, I talked to the charge nurse, and left for the night. I had been there for over six hours and I needed to eat dinner. I'll be there at ten o'clock this morning to see how he is doing, then I will leave to go with Kyle to his pre-op appointment, which is at 10:40. After that I will go back to Burbank to check in on D__ again, come home and try to get ready to work tomorrow. Wednesday is Kyle's surgery. I need to try to get to the market and get the laundry caught up somehow, too. Having a Wendy Clone around would be very useful right now.

I am so worried about D__ that it is getting harder to shift gears. I know my husband must be worried about the biopsy and I am, too, but D__'s problems seem much more pressing, frankly. I am pretty sure the biopsy will show precancerous changes, which is bad, but if we are careful about what he eats (and he eliminates caffeine), this can prevent more damage to his vocal cords and possibly even allow them to heal. Losing a little weight probably wouldn't hurt either one of us. Pecos Bills is not exactly diet food, so I suppose that eliminates it as a quickie lunch option, which is too bad as it's just a couple of blocks from D__'s house and a half a mile or less from Burbank Rehab. Anyway, I am going to make an effort to give my husband the time and attention he deserves. "You do want to keep me around, too, don't you?" Yes, Baboo, I certainly do.<3

Why am I so worried about D__? I am worried that unless someone is physically there at Burbank to make sure he gets turned and washed up and gets his mouth care, no one will do it. He can't even push the call button to ask for a nurse, let alone make her understand what he needs. It's so easy to ignore a patient who doesn't call, since there are so many who are calling, with needs just as important. It's very easy to ignore the needs of the helpless, the needs of those who can no longer speak for themselves.

I was working when Kyle called yesterday. Medicare denied the appeal, so as of noon today, Medicare is no longer paying for D__'s hospital stay. Except Medicare wasn't ever going to be paying for it--the insurance plan was. Medicare gives Secure Horizons, his Medicare Advantage Plan, a certain amount of money per month per person enrolled. What isn't spent on the patient, therefore, is profit. No wonder he couldn't get an appointment to see a vascular surgeon for months. First, he had to give up playing golf, then he had to walk with a cane, graduating to using a walker when the pain became too bad. Finally, the pain in his left leg was so bad, the leg gave out, he took a tumble and sustained a concussion ten days ago. I will be making a complaint to Medicare about his primary physician, the gatekeeper, who kept him from getting that appointment. I don't think it would have made any difference in this outcome but at least he might have had better quality of life. Plus, now that the leg is getting some feeling back as he recovers from the stroke, the pain is inevitably going to compromise his ability to learn to walk again.

My father-in-law was an accountant, assistant to the controller for Dart Industries, before it was acquired by Kraft Foods. He took early retirement rather than relocate to the Midwest, where the corporate head quarters of Kraft was located. He was a very frugal man who managed to accumulate over half a million dollars in his retirement account, back in the eighties, despite the fact that up until the last few years of his working life he was very underpaid. During the merger, he oversaw the conversion of Kraft's accounting system from a manual one, utilizing paper and pencils (where the term pencil pusher comes from, perhaps) to a computerized one he helped design.

All of this is a long way around of saying that he was a meticulous records keeper. We have notes about every symptom, every phone call and every doctor's visit, as his peripheral vascular disease progressed. It's a pretty damning record. According the the vascular surgeon we spoke to at Glendale Adventist, the operation to clear the arterial blockage is a relatively simple one.

But now our focus is on forcing the insurance company to place him in a facility we have approved. What I am afraid of is that "the list" of skilled nursing facilities that Health Care Partners (isn't that an ironic name?) has contracts with isn't a list for us to choose from, it's a list for them to choose from for him. When I called Medicare yesterday, they were very blunt about D__'s situation. "He has to abide by the terms of his contract with his Medicare Advantage Plan." They did say I could call back and file a complaint if I was unable "to resolve the dispute in a satisfactory manner." Whoopee.

Resolve the dispute? This is a dependent, sick, elderly man we are talking about here. Naturally, the case manager who was on call Saturday had a different list than the one we spoke to on Friday; however, topping the list was the place we had vetoed in the first place. In addition, she had three other places, all over an hours drive from where his daughter and her family reside, all but one of them just as poorly run as the one in Burbank. Anyway, the transfer, which she assured us would take place just as soon as she located a bed, any bed, that would take him, was put off until today at the earliest because the Evil Overload, I mean the doctor overseeing his care, failed to call the nurse back with a new discharge order. When we filed the appeal, he put the discharge on hold, citing "no placement available," which was a blanket untruth. I have no idea why the doctor did that, actually. It probably cost them some money.

The hospital brought us paperwork to fill out if we want financial assistance from them to help pay for any additional costs due to filing the appeal. I guess we'll fill them out, although I doubt D__ will qualify. Doing so will force my husband (who is not a good records keeper, except at work) to begin to unravel his dad's financial situation, especially as regards to the stock market crash. According to some websites I visited, and one of the nursing homes we spoke to yesterday, the Advantage Plan will probably only pay for twenty days of rehab for D__, a far cry from the sixty days that he could get in theory from regular Medicare. What this means is that instead of two months to figure out a plan, we have less than three weeks. My husband will not be able to speak for a week following his biopsy. The timing simply couldn't be worse.

Oh, and by the way, Medicare didn't even follow its own appeal process. idunnoh never received a detailed explanation from D__'s doctor of why he was ready to be discharged (Step Two), and the doctor from Medicare never called us to get our input on why we thought he wasn't ready (Step Three). We just went directly to Deny Appeal, which clearly is Step Four. Why am I not surprised?

Yesterday I got a call from my brother-in-law informing me that my father-in-law was going to be transferred from his acute care bed to a nursing home. That was not a surprise; what came as a shock was that the transfer was planned for the same day, at five o'clock. Ideally, a family is involved in the discharge process from the first day. A transfer from one facility to another is a big deal. Usually, a family is given a choice of destinations, some time to go visit them AND GIVE THEIR INPUT. We were not. Most importantly, the person who was designated D__'s Medical Power of Attorney, idunnoh, was never informed of the transfer at all. So he called Medicare and filed an appeal, which stopped the process, until an outside agency can review the medical justification for moving him. I am expecting the appeal to be denied but at least it bought him more time in the hospital and bought us more time to find him a place we are happy with.

This turns out to be far more complicated than you think. First, you search on the Medicare website for an excellent facility that you feel will meet his needs, then the insurance company tells you, no, they don't have a contract with them.

We visited three of the four facilities in the Glendale area that they do have a contract with, two with four star ratings, one with a two star rating. The best is a five star rating but, as previously mentioned, they don't have contracts with those two places. As it happens, today being the day before Halloween, every single place was having a costume party. Picture a director of nursing wearing a Snow White costume accompanied by a social worker in a witch mask carrying a broom stick (apologies to any Wiccans on my flist) giving us a tour.

The place the insurance company wants us to send him to is a real rehab facility but it has only a two star rating. This is bad in and of itself, but it's the nature of two of the offenses that concern us: failing to do a background check on all of their employees and failing to report abuse. Above all we want him to be safe. The rehab facility might be better for physical therapy but it worries me that he can't make his needs known and can't really tell us if anything is wrong or, God forbid, if anyone is abusive. The place we are leaning toward feels homey and safe and all of the residents looked very well looked after and even content. The social worker has been there for fifteen years, the dietitian for twenty, the medication nurse for ten. They reassured us that they have the capacity to do his therapy. He gets only sixty days of rehab paid for by Medicare. In any case, I can't see him ever living on his own again so that eventually will require some tough decisions, too.

I'm going to try to visit each place at least one more time, to get a sense of what it's like to be there on a normal day, without everyone in party mode. Then, we'll have to take a chance, pick from the options available to us, and hope we've chosen well.

Thank you to all of you who replied to my last post. Thanks, too, for your kind thoughts and your prayers for my family and most especially for my father-in-law.

idunnoh's surgery is scheduled for Wednesday, November 4th; the results will be back in around seven working days.

As previously predicted, none of the expensive tests that were performed are being used to help my father-in-law. The cause of the stroke was his blocked right carotid artery, but since "the blood vessels in his brain are too fragile," they aren't going to do anything to unblock the artery. If they did, he would "just bleed into his brain." I'm not disputing the doctor's findings, mind you, how could I? I'm "just a nurse." But why do a diagnostic test if you already know that there is nothing that can be done? This is what is wrong with our health care system. Diagnostic tests are ordered that do nothing except enrich the provider of care and add to the patient's bill (and cover the doctor's ass). I'm sure we will find multiple charges for "consultants" who never so much as looked at my father-in-law, too. I was there for twenty-one straight hours, never left the room except for bathroom breaks, and for a half hour dinner around 7:00 pm, and I never saw a physician enter his room, let alone do a physical exam.

This is the health care system people want to preserve?

Naturally, they are already talking about where to send him next. Ideally, he will be placed in a setting where he can be given physical and occupational therapy to help him learn to walk again, or at least to help us learn to transfer him to a wheelchair safely, and to a raised toilet, and so on. He has too many assets (a house, a car, a retirement account that has lost half its value thanks to the recession) to be eligible for government aid, so whatever expenses are not covered by his HMO, he will have to pay out of pocket. It might be cheaper to send him home but that will require us hiring a bevy of caretakers to help. Everyone, except his daughter, has a job, and we all have to keep working to pay our bills. I already have a bad back and my husband is not allowed to lift at all because he has five herniated discs in his thoracic and cervical spine. My sister-in-law and her husband have health issues of their own. My father-in-law is not a big man but he does weigh 140 pounds. I can't even turn him by myself, let alone try to get him to a wheelchair. Also, according to the hospital, home equipment is not provided for free: we will have to pay for anything he needs.

This is the health care system people want to preserve?

Yesterday, in a fit of self-indulgence, I made the last entry flocked. It seemed too personal to let just any passerby see and comment. Today I have changed my mind. The U.S. Congress is on the verge of passing health care reform so I want anyone who can to see for themselves just what kind of care they are paying for now. Surely we can and must do better, for our parents' sakes, for ourselves and for our children.

Life is strange. Something that you think is pretty bad happens, like you find out that your aged car needs five hundred dollars worth of repairs. Then you come home to find out that your husband needs a biopsy on his larynx, which makes the car repair problem seem very insignificant.

I was in shock. How can this be happening--he quit smoking fifteen years ago and he's never been a drinker. But as it turns out, the damage to his larynx isn't from smoking, it's from acid reflux, the same problem that caused his cancer of the esophagus fifteen years ago. So I freaked out a little bit, cursed God, and Fate and then I calmed down. However bad it turns out to be, we have been down this road before and at least this time, our marriage is strong and our son is an adult. The biopsy is scheduled for next Wednesday; fortunately I was able to swap a day with another nurse in order to be around if he needed me. idunnoh has arranged for a substitute teacher for the week following the surgery for the mandated voice rest.

Then life presented another challenge. Last Wednesday, my father-in-law took a tumble and sustained a concussion. The doctors in the emergency room did a head CT (no MRI is possible because he has an implanted defibrillator), pronounced him okay and sent him home. His vision was blurred, and he seemed a little dazed but other than a bump on the head, a strained shoulder and a skin tear on his left arm, he seemed okay to me. He could walk, talk and was in his right mind. In what now seems like a moment of precognition, he began discussing the need to get some of his affairs in order, particularly in regards to a dear friend whose finances he had taken over when she was stricken with Alzheimer's disease. "I need to get B---on the account so that she can sign checks, too."

Alas, he was not able to do that. Yesterday morning, we received a call from his friend's caregiver. My father-in-law had had a stroke and was being taken via ambulance to the emergency room. For reasons that are not entirely clear to me, they elected not to treat him, although they have been running up quite a bill doing diagnostic tests that will almost certainly not be used to do anything useful for him. He has had many people come in "to evaluate him" for his potential for rehabilitation. The bottom line is as soon as his HMO declares him no longer acute, the hospital will boot him out and it will be up to us to cobble together some sort of care for him. I'm pretty sure he has no long-term care insurance. (Note to self:purchase long-term care insurance asap.)

We are not alone in dealing with this. My husband has a sister and a brother-in-law, four grandsons, and many friends. Unfortunately, when you are eighty-five, many of your friends are also in need of help, like the gentleman D__ has been driving to church every Sunday for years.

However, I am the designated care-giver for the night. I can't do it tomorrow because I have to work the next morning. I can't do it the following night because I will be exhausted from working all day, or the next night, as I have to work the next day and so on. It's going to be a problem. D__'s not in intensive care--if he was, I would go home and get some sleep. He's on a telemetry unit and as far as I can tell, unless I call and request help to turn him, he isn't going to be turned. It took twenty-four hours and three different shifts of nurses to get them to move the IV from the crook of his right arm--the only arm he can move--so that the IV pump wouldn't go off every ten minutes when he bent his arm. I hadn't told anyone I was a nurse but my sister-in-law blurted it out before I could stop her, so now, as long as I'm here, the staff is going to let me do as much of his care as I am willing to take on.

When my husband was in the hospital, once he got out of intensive care, that was it. The nurse came in once every eight hours to take his vital signs and disappeared for the rest of the shift. I bathed him, I changed his bed, I made him get out of bed and walked him three times a day. I made him use his breathing device and cough to clear his lungs. It was infuriating but what was I supposed to do? After a week of this, I kind of blew up at the staff and they promptly called the clinical nurse specialist who immediately called the social worker to assess my coping skills.

So far, I have repositioned D__ three times, given him the tissue box a hundred times, and found the remote for him a thousand times. For better or worse, he isn't the kind of guy who will ask you do anything for him, so you have to keep trying to anticipate his needs. So I am settling in for a long night of caring for a restless, anxious, helpless man, who incidentally is one of the kindest, most giving, and most dependable individuals I've ever had the privilege of knowing. After a lifetime of caring for others, it's time for him to be cared for in return.

This idea is reposted from vjs2259.

As a scientist, although I am not a medical professional by a long shot, I am often asked by family and friends for advice about medical matters. The anti-vaccination crew is out in force over both the seasonal and H1Ni flu vaccinations. If you're wondering, I am in favor of everyone getting vaccinated who can, to protect both themselves and those who cannot protect themselves.

With all the doctor characters in fandom, why not make an icon like the excellent Dr. Franklin one ruuger has made at my request? Get Drs. Dana Scully, Martha Jones, Leonard McCoy, Beverly Crusher, Owen Harper, Julian Bashir, Simon Tam, etc. in on it. Make it a general fandom iconic PSA. What do you all think?

I think it is an awesome idea. Now, if all of you talented people out there could please create those icons. I would like a Dr. Dana Scully, please, with a New!Trek Dr. McCoy, on the side. Oh, and TOS Nurse Chapel!

Title: "The Things We Thought That We Should Do"
Author: wendelah1
Fandom: The X-Files
Rating: PG-13, for language
Summary: Diana Fowley contemplates her past as an F.B.I. Agent, and a member of the Syndicate, her present life as a fugitive, and her future as a woman living with breast cancer. This is an alternative universe in which, among other things, Diana does not die at the end of Amor Fati.
Author's Notes: Written for the femgenficathon, this story is a prequel to An Everywhere of Silver, written as speculation fic for last summer's The X-Files: I Want to Believe; however, reading it requires no prior knowledge of either the film or the earlier story. My thanks to hummingfly for her last minute beta services, to gehayi for her understanding in allowing me to post this late, and to idella for her insightful feedback, her support, and for loving to read stories about Diana.


( The Things We Thought That We Should Do )

It's actually raining in my world, which is a rare enough occurrence to be worth mentioning. I should be frantically trying to finish my story for the femgenficathon so that I can revise it and get it posted by the deadline. Instead I am sitting here noting that not only have I have not posted here in over a week, what I did post last was my usual fandom nonsense. My apologies to those of you are interested in anything but fandom. Someday I will resume regular programming, I swear it.

( my latest H1N1 diatribe )

( Non-health related news )

( Yes, I had a birthday )

( Yes, that icon is Mimi Rogers )

One last thing, today is Fox Mulder's forty-eighth birthday. If you haven't already, to celebrate, you could go enjoy Syntax6's "Birthday Stories". Yes, as a matter of fact, I have recced it here before. Twice. So go on, read about Mulder's and Scully's birthdays, seasons one through seven, and when you are done, why not leave our author some feedback?

I finally finished my story for treknovelfest. Yeah, I'm cross-posting it.


Title: A Sea Of Summer Air
Author: wendelah1
Rating: PG-13, for language
Fandom: Star Trek XI
Characters: Kirk, McCoy, Chapel, implied Spock/Uhura
Length: 7,362
Summary: "Captain, this is a classic example of the short-comings of the universal translator, which is why I have been recommending that a skilled linguist be assigned to all away missions involving first contact situations."

Originally written for prompt #27 for the treknovelfest. Author's notes at the end.

( A Sea of Summer Air )

As of September 17th, here is the latest status for The X-Files Geocities sites. There were even more than I had originally thought. But luckily, Mimic117 is on the case. This is cut-and-pasted from her public entry at Fandomonium. I still need them all screen capped for Fanlore, of course. But now that I have my new add-on for Mozilla that should be a snap. (Ha Ha! Nothing is a snap.)

I am having a terrible time saving fic as text files, suddenly. Firefox wants to save them as Mozilla Firefox documents, which is good, in a way, because it gives you a lot of options but if you just want the text file, looking like it does on the page, it is a pain in the ass. I have to go in and edit it, then save it again to turn it into something readable. Is this normal or am I screwing up as usual?

( Cut because this is long, long, long )

Special kudos to Mimic117 for carrying the ball on this one. On the other hand, I have no idea what is going on with the Authors sites. Still, is this fandom awesome or what?

If there are any Buddhists out there, I am going with idunnoh to hear Thich Nhat Hanh speak today at the Pasadena Civic Auditorium. This is how shallow I am: I am worried about what I am going to wear.

Everyone knows how preoccupied a certain compulsive member of fandom has become of late with the impending loss of Geocities. Obsessed, even. We are going to lose so much, so many sites, just gone, poof, subject forever to the vagaries of the Wayback Machine and its peculiar ability to save 99 per cent of a website yet manage to miss the one story you simply can't live without. And you know you can't save everything so you look around for what is irreplaceable, what won't be found anywhere, except on other people's hard drives, and then when those are gone?

Then what?

The crazy thing is that this is happening all of the time. Every minute that goes by, another website dies, whenever someone decides that this fandom thing is tiresome, or they can't afford the fees anymore, or the web host itself just goes away, due to market pressures. Or maybe they decide to reinvent themselves, creating a new web identity, leaving behind everything of the previous life, shed and discarded, like last year's fashion. This is life on the web. Geocities is big and symbolic but really, it is just a small part of what's already been lost.

I still don't like it.

Just by accident, I discovered two more dead links at xf_book_club to author websites, sites that were alive in 2008, which have since gone away. Luckily, in both these cases, I was able to get working links from elsewhere. My sense of order won't allow me to let the links stay broken if I can fix them. What if someone reads what we've said about the fic and decides they want to read it, too? Which reminds me, I have to go through all of the stories and see what will be lost with Geocities and start trying to find new links, mostly through the Internet Archive, these days.

Everything dies.

In the span of human history, this is very unimportant. I mean, why aren't I writing about global warming and its effect on wildfires in western regions of North America? Why aren't I writing about the Station Fire, which burned down people's homes and a quarter of the Angeles Crest Forest and killed two firefighters during the weeks it raged out of control, practically in my own backyard? Why aren't I trying to do something about that, or healthcare, or one of the other myriad Real Problems that come across my desktop via Important Messages from Amnesty International and Change.org and President Obama?

I don't know.

Maybe it just comes down to a matter of scale. Maybe global warming and national health care and the Station Fire just feel too big and too overwhelming to tackle. Maybe deep down, I don't believe I can make a difference. Fandom is tiny and unimportant but it's where I live, too. In the wake of the Station Fire, there are already hundreds of volunteers ready to hike up into the burnt areas to replant the pine trees, just as they have always done when the fires raged out of control.

Maybe I just need to plant some trees.