Giving Thanks

Gee, it's been a few days since I posted, but it doesn't feel like it. I think I'm still living in Halloweenland. My yard looks like it, anyway. There has been so much to do this week, I haven't taken everything down yet. Tomorrow I need to go back over to the hospital for a competency testing on the new upgrades to the computer system before it goes live on Sunday. Even if census is low, everyone scheduled will have to come on in to work, because the system will crash and nothing will go as planned. That's always the way it is when we go through a major "upgrade." But hey, it's a living!

Today was MD appointment day. First J-Man saw our primary physician and had another clotting test done. These results were therapeutic, so he stays on the same dose of the blood thinner. His color is better, less sallow, and the swelling is minimal. Except for some lingering tiredness, he's feeling well. Everything's status quo.

Then we saw the gastroenterologist who reviewed the biopsy results with us and questioned us in detail about J-Man's meds and medical history. They still have no answer as to why his liver shut down, but Dr. R. is going to research the past medications and one of the ongoing ones to see if there are any rare incidents of liver failure with them. It's possible there was a latent liver problem from even as far back as the stroke and some medication may have triggered a strange reaction. He's still a walking mystery. But there's nothing that needs to be done there, either. Next visit is 3 months.

We have been so fortunate to have the terrific doctors and staff that we do. Because of his swiss cheese memory, J-Man's perceptions and timelines can be unreliable, and I have to be his walking memory bank. But everyone always asks him the questions first, which is so vital to maintaining his dignity. Then, if I have to modify or correct his answers, no one makes me feel like an overbearing wife. We have dealt with many healthcare personnel in the last month and not once have we had an unpleasant experience. Not once.

Well, if you don't count insurance issues.


And we don't.

The Countdown is Scaring Me!

I am off work from now until Tuesday night, the 3rd.  It may seem like a long time, but in this week, besides all the Halloween preparations, is squeezed in a 3-hr mandatory inservice, a lab draw at the hospital, new tires for the car, an oil change and fuse replacement for the truck, a grooming session for Tandi, and attendance at "The Woman in Black" at the local Playhouse. They tried to work in another MD appointment on Fri. but it didn't work out, thank goodness. 

Oh, and the lab draw on Friday?  Someone misread or misreported the results.  The Vitamin K was the absolute wrong thing to give J-Man, as his level of the blood thinner was sub-therapeutic--too low. And he's gotten the vitamin K all weekend.

When I got to work last night, I pulled his results up on the computer and found the error.  I placed a call to his doc, who was very upset, and we restarted J-Man back on the injectable blood thinner.  You know, the $90 a pop kind, that we were fortunate enough to be given. Thankfully, we had some left, and someone covered my patients for me at work so I could drive home and give him a dose and rush right back to work.  More labs were drawn this morning, and so far, everything is A-OK.  We just have to start all over with the Coumadin again.

Tomorrow it's due to rain.  Hard.  All day and all night.  Did I need any more interruptions in my Halloween preps??? Maybe it'll be drier by Wed. afternoon and I can put more out and get the lighting arranged.  Sorry there are no pictures yet.  I worked out there for a while, but my neighbors kept coming by to comment on the goings on and ask about J-Man.  One of them remarked that I don't seem to have as much out this year as usual.

Wonder why that is?

What a Ride!

Today was our follow-up visit to our primary care MD. (Okay, really it was J-Man's appointment but as we are attached at the hip these days, I felt it was our appointment.) The hospital had not sent a copy of the biopsy to our doctor as promised, so his staff got on the phone and hustled up the report. ( Just subtracted 3 points from the rival hospital's grade.)  And the result?  We still don't know what caused the liver failure. The reading was a bunch of gobbledy-gook--even our MD was scratching his head over the report--but it seems to be ruling out cancer and any auto-immune diseases.  The pathologist's comment suggests either a drug reaction or some sort of blockage outside the liver, which was already ruled out with CT scans and MRI. He also said cirrhosis can't be ruled out--but cirrhosis is a very generic condition with multiple causes--all of which we have already eliminated, with the exception of "drugs, toxins and infections."

So really, we don't know much more than we did before.  We don't know what caused his liver to shut down, and we don't know if it will happen again, but he seems to be getting better: the itching has stopped and he's lost about 25 lbs of fluid, both of which would indicate his liver is beginning to function again.

One side complication: J-Man was started on a normal dose of oral blood thinner for the clots in his leg, in preparation for getting him off the injectable blood thinner.  They did a quick test in the doctor's office to check his level, then came back and re-did the test--and it was so high it wouldn't register.  We were sent over to the hospital to have the test done a third time, and it read critically high.  All blood thinners have been stopped for now and the physician's office and I had to call around to find a pharmacy that carries an injectable Vitamin K so I could give him that dose ASAP and make him clot again. Things just can't be simple, can they?

Monday we'll rerun the tests and try to get him back on track. Tomorrow at work I will go into the computer and look up his other labs. I suspect they will prove his liver function is improving.

Many thanks to all of you who have had us in your thoughts and prayers these last two weeks. It is awesome to think that people we have never laid eyes on and may never meet in this life, have cared that much.

Over and Done

We are back home now and just resting. J did well, and the biopsy didn't take long.  He said he can still feel the sensation of the sheath, and where the biopsy was done. The radiologist said some folks never feel the biopsy and some do--and J-Man did.  He said it felt like a punch to the gut, and he's a little bit sore because they got several tissue samples. 

I told him I'm sure his heart, vena cava and liver are screaming "What the h___ was that???" as the sheath went where none have gone before.  But so far so good, and he's decided to stretch out and watch his news shows awhile.  He had his cheeseburger, but isn't as hungry as he thought he'd be. 

I personally think the sofa is calling my name.  

"Cominnggg...."

Blow by blow

J-Man is in the procedure room now.  They are expecting anywhere from 30 min to 1.5 hours for the procedure, depending on how smoothly everything goes.  Recovery should be 1-3 hours, also depending.

Based on the registration information, the insurance company is playing nice right now and not blocking this.  Good thing, J says, as he hasn't eaten since supper last night, and they don't want to mess with a hungry man.

He has made me promise to take him to Great American Hot Dog afterwards for a cheeseburger.  Heck, I might even get him two.

More later.

Two Adults and a Dog

Well, DD left this morning and is home now, tossing limp vegetables out, mollifying the cats, and getting ready for work tomorrow.  She has been a gem, cooking for her dad, reading to him, and giving him his meds when I had to work and sleep.  We probably won't see her again until around Thanksgiving, or maybe Christmas.  She has suggested we think about moving closer to her, so she would be able to help more.  The thought surprised me, as I sometimes regress to her teens and early twenties, when she was so anxious to get out on her own, away from home and parental units. But she is an adult and I believe this summer, with first her own health issues and now her dad's, has changed all our perspectives.

J-Man's cousin Bill came up yesterday and left this morning.  He thought he'd be able to get a room here in town, if he stayed overnight, and I laughed when he suggested it. It's leaf-peeper season and rooms are hard to come by, especially on the weekend.  No matter.  We tossed the extra pillows off the sofa and threw on some queen-sized sheets and blankets, and he declared it more comfortable than his own couch, where he slept after coming down with some respiratory illness a couple of weeks ago. It's a long drive from his home to ours, about 5 1/2 hours, but it did hubby a world of good to have a member of his family around who wasn't pushing pills or needles or watching what he ate--and wasn't female!  We did a lot of laughing and the guys did a lot of reminiscing and we introduced Bill to the movie Sneakers. 

The house feels very empty with half its population gone. Tandi has had a great time playing with DD's dog, but she has spent the rest of the day snoozing on the back of the sofa, exhausted from the week, and happy to be back in her safe little routine with her human family all together again.

It all feels rather surreal right now; we're in our own home with usual bedtimes, thermostat control, and refrigerator access again, but things are not quite the same.  There's a stack of pharmacy receipts and paperwork on the dining room table, new medication times to learn, and these on the bathroom counter, waiting for an empty jug in which to be discarded:

That represents over $800.00 worth of medication injected into hubby's abdominal wall. Doesn't look like that much, does it? Tonight was his last injection until after the liver biopsy Tues. afternoon.

Tomorrow the carpet cleaner comes, followed by some salesman who will pitch a clean air system recitation that I will only halfway hear, in order to help a friend get a carpet shampooer. I wish I'd said no. There are MD appointments to be made, meals to be cooked, laundry to do, floors to be mopped and recorded programs to be watched, but really, we wait. And after Tuesday we wait again.  And through it all, we try not to speculate or worry.

This week has been beyond description.  There have been blessings and meltdowns, negatives and positives. We have a wonderful physician, who, along with his PA, Julie, has put heart and soul into caring for us. He has spent hours researching possible diagnoses, consulting with the other docs, finding out what meds J can take, coordinating  tests and explaining everything to J-Man, who has a bit of a swiss cheese memory.  

J-Man came home as scheduled on Wed. Before we left, as we were about to get him dressed, the manager of the unit we were on, a couple of other nurses, and the director of nurses came to the room. My heart dropped.  I just knew I was going to be disciplined for going into the computer and looking up J's chart.  Never mind that he'd given me permission right in front of one of the docs--I am still an employee of the hospital.
Instead, they presented me with the October Excellence in Nursing Award for the dolls I have been doing for our little demented ladies and the Tangles I bought for the confused, fidgety men.  (Thanks for the link and idea, Annie! And Mighty Mom!) I was doing fine until that moment, when it was if someone pulled her finger from the dike, and the tears flowed. My emotions have been all over the place since then. Part of the award, besides the pin for my name badge, is a $300.00 gift certificate for either Lowe's, Home Depot, Wal-Mart, or one of three area malls. As I have been talking with Handyman Matters about installing a grab bar by the toilet in the bathroom, that money should come in handy!

There was a flurry of last-minute activity getting arrangements made, but we made it home by 1pm. He has been mostly stationed in the recliner or the bed since then, with his daughter standing watch while I work and sleep. DD has been wonderful, cooking, washing dishes, running errands. I don't know what we would have done without her, as I needed to get back to work and earn a paycheck. We bought a baby monitor, so she is able to hear if he gets up in the night or should call out for her. Unfortunately, his propensity to wake up several times in the night and turn on Fox News or talk radio until he falls asleep again is making her nuts. I am off tonight, so she can get a full night's sleep.

The liver biopsy was rescheduled for Tues. at 12:30 our time. I am a bit frustrated at the delay, as this means it will be probably next Thurs. or Fri. before we get the results, and we have been on pins and needles waiting for an answer to this puzzle. DD is leaving Sun to go back to Virginia and work, so it will be just the two of us again. Folks at work have been absolutely wonderful, and I was able to get off work Tues. night so I can keep an eye on him post-procedure.

Sun. we will go over to our hospital to have more labwork drawn. I asked that our hospital provide me with copies of his labwork, radiology reports, history and physical and consultation reports so I will have them when we head over to the other hospital. I want no delays due to lost paperwork! I'm also anxious to see if there has been any changes in his liver or kidney function, but don't know if I'll see these new labs beforehand.

The delay caused some glitches with J-Man's medication, too. We have a lousy insurance plan, and I have been over to Human Resources to discuss the problems we've had. The insurance company wants to contest his last two days in the hospital, but once he was sent home, they stopped covering one of his hospital medications. It's a blood thinner that can only be given by injection--and it's $90.00 a pop, twice a day. As he's going to need to be on it longer now that the biopsy has been delayed, we were looking at over $2000.00 for that medication alone. I was going to pull it out of savings, as there is no way he can do without it, but the folks in case management, and the unit manager who nominated me for the award, Kim, got busy and found a donor for the medication.  It was one of the anesthesiologists whose husband recently died.  Another flow of tears. This wouldn't have been possible if I'd taken another job as I was thinking. (Oh, I forgot to tell you--our manager was fired!  Rumor has it she was diverting narcotics, but I don't know that for sure.  Doesn't matter--she's gone, and the whole place is relieved.  Some folks are even coming back to work here.)
J-Man is in good spirits, though suffering from a bit of cabin fever. I've been driving his SUV, as the lights on my truck fade in and out on me, so besides being held hostage a patient at the hospital this week he was also stuck  here the last couple of days. We have probably missed the peak color at the higher elevations along the Blue Ridge Parkway, but we might just go for a drive after the labwork on Sunday and gawk at the leaves just like tourists.

We've decided to cancel the Halloween party for this year.  I just lost the past two weeks what with working and J's inability to care for himself and then the hospitalization, and there just isn't enough time to send out invitations, decide on a menu, shop and prepare the food, as well as finish the props, clean the house, and carve jack-o-lanterns.  Heck, I haven't even bought the candy yet. Four of us who work together on nights are all off that night, so maybe we'll just watch scary movies and eat popcorn.

Tomorrow his cousin is driving up from Birmingham to see him.  He thinks he'll be able to get a room if he needs to, because it's a long drive, but not this time of the year! So I need to buy groceries, help J with his shower, and do a bit of cleaning in the morning.  And I am chomping at the bit to create something--Halloween props or a table runner or more trivets--something! There are going to be cobwebs in my sewing room, and I didn't put them there.

Thanks again for all the emails and comments.  Please know that I still have them in my inbox and read and reread them when I'm feeling a little down, though I may not get to answer each one.  Right now there are over 160 posts from you folks waiting for me to read, and it'll be the middle of January before I'm through, at this rate. 

Good night for now!

Thanks to all of you for the prayers and good wishes, and kind emails.  I've been in a modified survival mode, but I read them all and will get around to answering you all --some day!

J-Man's kidneys are fully functioning again, and the diuretic is beginning to pull more fluid off of him--well, his extremities anyway. He has developed a urinary tract infection, though, and is on antibiotics for that. He is still on the blood thinner injections and will come home on those. Eventually, he'll be placed on Coumadin, which is given by mouth. His platelet count, though still well below low normal, is increasing, and that's a good thing.

His liver continues to be our main concern. He has become a little jaundiced, and has a lot of abdominal fluid on board. The lab results are still worse than when we came in, though they were a slight bit better today--the first time in a week. They have ruled out hepatitis A, B, and C, and some genetic disorders. Still being considered are some sort of congestion due to the right side of his heart, (which looks okay on the echocardiogram); an autoimmune disease; a toxin or medication reaction of some sort; a "sarcoid" liver, in which granulomas can form when the immune system goes into active mode and cause an organ to malfunction.  With the jaundice comes itching, so he spent a rather miserable night last night.  Today they started him on a medication that is helping a lot, and he asked for it again at bedtime so he can sleep better tonight.

So the next step is a liver biopsy. Because of the danger of bleeding, the specalist has chosen not to go through the skin, but rather through the jugular vein in the neck, down through the superior vena cava and a right turn at the liver. This way, if he has increased bleeding, he's bleeding into his own circulatory system. It's a procedure done in radiology, but it cannot be done at my little hospital, because, although some of our radiologists can perform it, we do not have the necessary equipment here. Instead it must be done at a nearby competitor which, though in a different hospital system, uses the same radiology group.


Don't ask me to explain the whys and wherefores of medical politics, but our hospital cannot just send him over to another hospital for treatment. He must be discharged from my hospital first. Our primary care physician's office is working on scheduling the biopsy, and the tentative plan is for Friday, but this isn't set in stone. I personally was hoping for Fri., as I have to work Wed. night and Thurs. night, and I don't know how long the procedure will take, nor when it can be scheduled. Barring any further complications, devils or the deep blue sea, he will be home tomorrow, and we will have more info then.

For now, he is happy to be coming home. DD has stayed with us, thanks to her understanding boss and co-workers, and has been such a help. I was able to leave him to come home and sleep last night, and that has made a world of difference. Apparently, according to sources who shall remain nameless, I was getting "a little cranky." Hmmph.

Please keep us in your thoughts over the next week.  He's not out of the woods yet, but it is good to finally have a plan.