Something You Wouldn't Know if Your Life Wasn't Falling Apart

It's now possible to get walkers all tripped out in electric blue and candy apple red. 

Sarah Hates Doctors, But That Can Be So Limiting*

In the last post, I said that Karen would be discharged in a few minutes. It was actually a couple more hours so we left the hospital at almost 10 pm. Yesterday the home health nurse came by to draw blood. She said she couldn't recommend that Karen be prescribed oral pain meds because she had an infusion pump providing pain management and that according to the log, Karen wasn't availing herself of it as much as she could.

Now we've been waiting for almost two hours, with no end in sight, for someone to come fill the pump which they've let run empty.
Oops, false alarm. The nurse has come and gone. The pump wasn't empty, the bag was mislabeled, so it just thought it was empty.

*Sarah Hates Doctors

Discharged Without Cause

I used to have a replacement carrier for my route. He used to vacation at the Alaska Psychiatric Institute, so you can take this with a grain of salt, or thorazine like he did, but he once said about me, "It doesn't take a genius, but luckily we have one." That was supposed to lead into an idea I had at work today, but first I'd have to explain in punishing length some of new policies at the post office which I don't think I could sit through. Suffice it to say, in a moronocracy, even a half wit can look bright.
Karen is being discharged in a few minutes. It was sort of a surprise to the nephrologist, and the home health nurse, but her other doctors have all the confidence in the world, which if you can believe them, they created.

Today We Learned That Kidneys Have Six Different Functions

When I got to the hospital after work today, Karen was being seen by a nephrologist. After we talked, he said, he didn't think she'd be going home tomorrow, either. As he put, "She's ill."
Sarah and Sean were scheduled to leave Tuesday night, but they extended their stay. It's been a godsend to have them here. Do you think it's Pagan to say "godsend", instead of "Godsend"?
I've been riding my bike home from the hospital in the dark. The light I have is just barely bright enough to light up the trail directly in front of me. In order to see things that aren't directly in front of me, I put an old light on the handlebars, and the light I had there, on my helmet. I didn't have a mounting kit, so I used a purple bungie cord I had been using to hold my cuff out of the bottle cage on my bike. I'll use it tonight for the first time. I'm thinking that not only will I be able to see, but people will be able to see me. I imagine they'll think I look pretty clever, pretty cool, not the least bit geeky.

Outsourcing

They disconnected Karen from all her pain meds today and sent her down for an MRI. Part way through, the lack of pain control caused Karen to abort the mission and she returned to her room. Since that means that we have nothing to report, I'll just include this link and let The Onion do my work for me.

http://www.theonion.com/content/node/86783

Wait, Aren't Women Supposed to be From Venus Anyway?

I read a short story when I was a kid about a country sheriff who doomed Earth's chances for space travel because when the people from Venus met him, the "leader", he brusquely refused their offers. See, he thought they were from Venice and he didn't want to go there.
We now have an update on why Karen didn't get an MRI yesterday. When she got down there, she said she wanted to use the open MRI tube, which -who knows why- is only available to out patients. We don't know if Karen was brusque or not, or if the MRI techs were from Venus, but we do know that they heard her stating a preference as a refusal to have an MRI at all. Today we return to our regular ward, square one.

Populist Post

I went back to work yesterday, and not a minute too soon. We were playing around with Karen's O2 and pulse sensor yesterday and my resting pulse is almost 20 beats a minute faster than it was when I was playing with her sensor a month ago. A customer today was telling me that when her daughter was in the ER last year, they billed her $56 for "pulmonary function testing". We probably added several hundred dollars to Karen's bill with our so-called fun last night.
As it stands now, the doctors are treating complications from her earlier treatments. The beauty of the system is that they can keep making things up, and making things worse, and then continue to send us bills. It's just crazy; like loaning people money they'll never be able to pay back, and then expecting the taxpayers to buy all the worthless loans from the millionaire bankers. Karen is still running a fever, and her kidneys haven't exactly quit, they're more just working to rule. Yesterday a doctor said that she had no idea what was wrong with Karen, and she'd like to do a full body scan, but that really would be just a shot in the dark. Today they came up with some kind of rationale, and took Karen down for an MRI that she really didn't want. As it happened, this was along the lines of the deal where they pretend they're going to execute prisoners, and then at the last minute give them a reprieve. We have no idea why they took her down there, or why they didn't give her an MRI. We don't even know for sure who's handling her case. This last is of more than academic concern. Not only does the Postal Service not pay sick leave for FMLA cases, but they've sent me another ream of papers to further justify my time off. I need doctors to fill out forms labeled cardiac and even, this is true, orthopedic. I don't know what that's about, but it certainly gave me one more bone to pick with the Postal Service.

This Blows

We met the doctor this morning that's subbing for Karen's infectious disease doctor. She was funny and encouraging that this visit will be short, and gave some indications that the doctor's do know what's going on. Disconcertingly, though, when Karen dropped some pills the doctor picked them up, blew on them, and invoked the five second rule.
I've been saying that I was probably one of the people that disapproved of the Family and Medical Leave Act when it was enacted in 1993; calling it an unwarranted intrusion into collective bargaining and the free market. Now that I'm availing myself of its protections, I've been singing a different tune (We Are Family).
FMLA is set up to protect families from financial disaster during medical crises, except for the Postal Service implementation. If you need more than two weeks to care for a sick family member, you cannot use sick leave, you must use leave without pay, or annual leave. I've spent 30 years accruing sick leave, but now that I need it, I can't have it. Luckily, I do have enough annual leave to cover at least this period. Karen has a room with view, but it's still not exactly where I'd planned to vacation this fall.

Can You Believe This?

It's a day later, and unbelievably, we find ourselves back in the ER with Karen about to be admitted as if the last six weeks hadn't happened, and wouldn't that have been nice? They're concerned that she has a whole new infection in her spine, and they want to try a whole new antibiotic.
The good news is, I asked if we could have our old room back, and they came very close. We're going back to 5 North. It's a relief because I didn't want to have to start all over trying to charm a new set of nurses.

Buck Rogers Goes to the Doctor

We're waiting for the nuclear medicine (which sounds very cool in a 1950's vision of the 21st century sort of way, but is really very mundane, although, come to think of it, at one point there was a geiger counter) staff to tell us if Karen's spinal fluid is leaking. If it is, that's one thing, but if it isn't, we've got a new, out of the blue, condition; apparently she may be readmitted due to renal problems.

We're Partly Home

We were at the ER for about three hours. They treated Karen with, or rather, to a turkey sandwich, and sent us home. As we were leaving, the woman that had been threatened by thugs was trying to get into a car full of thugs. The police were trying to stop her, but she explained that they were her thugs.

We have to go back tomorrow for an MRI, and a nuclear medicine study. Actually, they're only doing the MRI because they don't have the dye for the nuclear medicine study and they want to look busy until it arrives.

Back Home

This afternoon the home health nurse stopped by and changed the dressing over Karen's wound Vac. Subsequently, Karen had a splitting headache and nausea. The home health nurse called to check on Karen, then called back to say "Get to the emergency room right away."
Apparently the fluid coming out of her back didn't look like normal wound drainage, so now the concern is that they were PUMPING CSF out of her back.
Now here we sit in the full ER waiting room. One bright spot, some thugs are supposed to be coming to finish beating up a woman and some families have decided to take their emergencies to the other hospital. So we're getting close to the head of the line.

Ross: That's Painfully Funny. No, Wait, Just Painful.

Karen came home from the hospital today. The pain doctor that was subbing for her pain doctor told us she'd be discharged and was turning to go. "Um, her blood pressure is still wildly out of control," I said. "Oh, yeah, I'll have the hospitalist stop in.

Here's a little background, back a couple weeks ago when she had an intrathecal pump, it had Clonodine in it. That's a high blood pressure drug that has some efficacy in pain control. Her pain doctors replaced the Clonodine in the pump with a Clonodine pill.  According to the hospitalist, Clonodine works to control blood pressure, but when it's given just once a day, it has a rebound effect that's worse than the original problem. Ha, ha, part of the reason Karen spent 13 days in the hospital was that her doctors were making her blood pressure worse. Oh, and not scheduling the cardiologist that they said they would at the beginning of her stay. 

In about 45 minutes, I'm going to take a stab at running some antibiotics directly into Karen's vena cava.

I Don't Just Deliver GQ, I Live It

There were a few little glitches at work yesterday, but overall, not so bad.   A couple of my customers mentioned that the substitute carrier wasn't dressed as neatly as I dress. I'm not sure what to make of that; perhaps he was wearing pelts.

Karen is supposed to go home tomorrow. Yesterday she took her first faltering steps out of the room since she got here almost two weeks ago. Leah and I are going to be trained to do things with her medicines and PICC line. Ah well, it's true, man proposes, God disposes; the plan when I married a nurse was to have someone to take care of me.

Yesterday I had almost reached the point that if I stayed at the hospital any longer,  I was going to grind up match heads and give myself a tattoo. So, I went home and went to bed, and this morning I went to work for the first time this month. Considering that delivering mail is so mindless and rote (at least the way I do it) it was amazing how stimulated and vital it made me feel today.

No, Not That Anniversary

So even though Karen's head hurts worse than it has, and she was throwing up this morning, there is one bright spot. Now that she's had all of her pain-controlling-appliances removed, she can have an MRI. Some time today, they're going to look inside her head and see what they can see. Several people have noticed that one of her eyes is wandering away on its own, so maybe whatever is causing that, is also causing her headache, but on the other hand, they think the headache might be muscular, or really, who knows, it's been a month today since the surgery that landed her in this nightmare, and we don't know when she'll feel better, or even when she'll be out of the hospital.

All we know for sure is, that as I type this post I seem to be getting more and more irritable. 

But That Was Yesterday, and Yesterday's Gone

Karen had a headache and nausea overnight, and our release date has been pushed back, to when, we don't know.

Oh, What a Night

Except for a few small interruptions, Karen and I both had a good night's sleep. Karen was quite loopy most of yesterday, but today's she's back. A discharge planner has come by. We may be leaving someday.

Johnson and Johnson Merge With Hoover

The doctor just popped in. It will be Friday at the earliest before she's released.  Just now, wound services has arrived. I could be wrong, but I think they're going to attach a vacuum cleaner to Karen's wound. Nope, that's what they're doing. Apparently this device will improve the drainage from her incisions, and help the healing process by "putting traction" on the skin drawing it together. As a side benefit, no dust bunnies.

It's Quiet, Too Quiet

Karen's still in the hospital. The infectious disease guy poked his head in this morning, and said the infection seemed to be clearing up nicely. Her head still hurts, though.  We've seen no other doctors today, so we're just hanging out. Karen's room has a beautiful view, and there's an NCIS marathon on, so I guess we'll just stay busy staring out the window and watching TV.

Tomorrow it will have been a month since the day surgery that started this. We got the EOB yesterday for the two days Karen was in the hospital after the surgery. Not for the day of the surgery, or the surgery itself, mind you, and it was just a little less than twice what we paid for our first house. To be fair, our first house didn't have Wi-fi.

Alarums and Excursions

I think it's Monday morning now. A very long, difficult night. Karen was complaining of a headache that wasn't being controlled by really large doses of pain meds. Her arms and legs where the RSD is, and her back, where her incisions are, weren't bothering her, just her head. That was alarming enough that her doctor ordered a CT scan about 4am, and drove in from Wasilla to read it. The scan was completely normal looking, so along with everyone else coming in to look at Karen today, they've added a neurologist. The infectious disease doctor poked his head in around 7 this morning. The infection appears to be subsiding, good news in an otherwise pretty gloomy report.

Karen had a new nurse's aide last night. She said she was from Grenada. "Oh," I said, "we invaded Grenada."

Vicissitudes

A day of ups and downs. Karen seemed so weirdly out of it, that I took the nurse aside to tell her about it. I didn't feel that great myself, even though I'd gotten twice as much sleep as the night before, almost a full five hours. As the day went on, though, she perked up and I took a short nap. We also had a visitor who brought sunflowers and dahlias from her garden.
Tomorrow is going to be a big day, she's got a cardiologist, the Providence wound team, visits from her doctor, and her infectious disease doctor, and whoever else they can fit it in between taking vitals and blood, and giving pills and meals. Then, if all goes well, she might go home on Tuesday, although that is sort of speculative, depending as it does, on her temperature coming down and staying down, her pain being managed, and her incisions starting to close. That may be a lot of pressure to put on one day.

Too Early on Sunday Morning

A much better night. The infectious disease doctor finally showed up around midnight. It turns out that I'm his mailman. He asked if I'd be going back to work on Monday. I told him, "That's pretty much up to you." He told us that the most recent cultures were negative, and that, along with other signs, seems to indicate that, at present, with a nod to the unkowability of the future, she might be going home next week.

It's A Saturday Night, About 8:30

The doctor came by this morning and adjusted Karen's meds. She had a much better day than her night before. We've been waiting ever since then for the infectious disease doctor to stop by, since she's pretty much here because they were worried about an infection in her spine.

Come Saturday Morning

A rather long night. Karen had quite a bit of pain, and finally around 2am the nurse called her doctor and they increased her meds, but it still took until 4am for her to finally get even a little bit comfortable. Then we both slept lightly, or rather, coldly, the thermostat in the room was set on "glacier".

Now it's about 10am and her fever has returned, so that's a disappointment although the room does seem a little warmer.

Update and a Cozy Little French Real Estate Term

They finally came just before six this evening and got Karen for her surgery. The doctor talked to us about the PICC. After she goes home, sometime next week, they will be pumping antibiotics and whatever else comes to hand through the line...

The doctor just called, it's about 9:20 pm and they'll be sending Karen back up here to her room. I got them to bring up a bed chair, so we're going to be cozy in our little pied-à-terre.

Bigger Keyboard, Same Story; NOT FOR THE SQUEAMISH

After the last post, Karen's doctors determined that the tube from her implanted infusion pump was leaking, and in fact, had snapped. This meant that her CSF wasn't just oozing out, but was being drained out by the part of the tube that still extended into her spine. The grapefruit-sized lump she had in her spine since they implanted the stimulator was in fact, spinal fluid, which is what we had seen oozing out of her incision. They opened her back up, and repaired the line, and said that she'd be going home the next day, yesterday, but she didn't.
Among the worst possible outcomes from this latest operation was the possibility of infection that would mean removing both of the devices that are implanted in Karen's spine to control her pain. That surgery will be sometime today, but first they have to run a PICC into her vena cava.

Copy, Paste, Repeat

So, once again I find myself sleepless,typing into my phone,waiting for Karen to get out of surgery. She's been experiencing, "the worst pain of her life" for the last couple of days. Last night we noticed that she had drops of a clear liquid dripping out of her incision. It was like a little spring bubbling up out of her back.
You know how when you're at the ER, there's always an annoying person down the hall that's making so much noise and you wish they'd be quiet?
It turns out it's because they're in a lot of pain, possibly like Karen because their last surgery is still going horribly wrong.
Anyhoo, she's going to spend the night here and hopelessly she'll be coming home tomorrow.

Spending Spree

We spent time at Karen's doctor's office today. They've scheduled a CT scan to find out why her head still feels like it's going to explode. They ordered some of the medicine that Blue Cross doesn't pay for, so we also spent a small fortune down the hall at the pharmacy. I went back there later to pick up another prescription, but, alas, I couldn't; that prescription for breakthrough pain was being filled too soon. Apparently pain can only break through so often in Blue Cross's world.
So, no sleep last night, and based on mean time between moans of agony (no time at all), no time spent sleeping tonight either.

Well, I Guess, It's True; There is No Rest For the Weary

I know Karen's having a much tougher time recovering from her surgery than I am, taking care of her, but it's a sad commentary that work (where I'm not going to be able to go today) is my respite program.