Thursday, March 17, 2005

he’s home

We were on I-95 heading home at 7:00 pm. He’s home. Finally! Stanley was in the hospital longer from the complications than he was in hospital for the operation.

Tomorrow we have a long list of things to get squared away: getting things going with the visiting nurse, who will be changing Stanley’s dressings and administering the IV antibiotics; going to get his Coumadin level test over at Qwest; calling the surgeon’s office and getting all the appointments we have to keep set up (with Dr. Infectious Diseases, with the surgeon, etc.); finding out if S’s cardiologist will be following the Coumadin or his internist (the orders were written for the internist to follow it, but that’s weird so we have to find out if it’s what Dr. Robinson wants or if it’s an error from picking up the wrong doc’s name on the chart ... ) There’s more, but I don’t want to think any more about it tonight.

I am so tired I’m numb. Stanley is doing so much better, but is still feeling very weak and is also exhausted. At least he will be able to sleep without getting awakened for vitals, or by noises in the hall or staff laughing or talking loud. He’s still very binary.

More tomorrow—just too tired to organize my thoughts right now. And thank you so much to everyone—don’t know how we’d get through it all without your kindness and support.

posted by lee on 03/17/05 at 08:07 PM
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Saturday, March 19, 2005

almost breathing again

Yesterday was, well, low-level insane. All kinds of things to deal with. First, the home care nurse, Kathy, called and asked if the drugs were here yet. Huh? Wha? It was, what, 9:30 am? Me: “No.” Kathy: “What did they tell you at the hospital?” Me: “They said a visiting nurse would be coming today, but that’s all they said.” Kathy: “Ok, let me call the hospital and find out what’s going on.”

Heh. The hospital, it turns out, did not discharge Stanley on Thursday night. According to the hospital, he was still there. In a little while, Muriel, our Oxford case manager nurse, called to see how things were going. I filled her in, and asked her some questions about things I was still confused about, and that was mainly who was supposed to be following the Coumadin. I also called Dr. Robinson’s office to set up the follow-up appointment and ask if the order for the internist to follow the Coumadin, instead of the cardiologist, was correct. No, it’s not, according to Dr. R’s staff and they sorted it all out. S goes back to see Dr. R on Wednesday afternoon.

I also set up the follow up appointment with infectious disease, in this case Dr. Zane Saul, for the 28th. At least we don’t have to travel so far to see Dr. Saul since he has an office in Southport.

Dr. R’s office called again to see if we wanted the visiting nurse to draw the blood for the Coumadin check so we didn’t have to go to Qwest twice a week for it. Sure. But we ended up going to Qwest on Friday anyway because it didn’t look like anything was going to get resolved in time, and we are both terrified of the Coumadin level skyrocketing again.

Muriel, from Oxford, told us that she was told on Tuesday that S would be discharged on Thursday, so she had already put through all the orders for the visiting nurse, etc. She was surprised that the hospital screwed up the discharge.

So off we went to Qwest to get the level done. Then home to await Kathy’s visit. She arrived here around 2:00 or so. I liked her immediately—she strikes me as extremely competent, smart, and has a sense of humor to boot. Plus Ginger liked her. Stanley too.

I was feeling wigged out that the house has gotten so out of control, dog and cat hair turning our navy blue rug this weird mixture of red and gray, monster dust bunnies stalking us from everywhere, mail and newspapers and magazine stacked haphazardly, and Ginger’s shredded paper all over the place. I meant to clean up some before the nurse got here, but there was so much I had to do and I was, am, just so exhausted. Kathy just gave me a “Don’t be silly” look when I apologized for the mess, said, “You had more important things to deal with.”

Kathy asked tons of questions for the medical history she has to take, talked to us about what’s going on and what will happen. She took S’s blood pressure and oxygen level etc. and listened to his lungs. She said his lung is not sounding clear by a long shot, and asked us whether S is using his incentive spirometer. We assured her that he is. She asked to see it, and when she saw what it was, she said, “They must have gotten a good deal on those,” explaining that the one Bridgeport Hospital gave us is a piece of crap. Not in those words, but we got the picture. She suggested we go over to Connecticut Surgical Supply on Wall Street and get a real incentive spirometer.

Then she showed us how to hook up the Rocephin IV to the PIC line. Taught us to remember SASH—saline, alcohol, saline, heperin. The first saline injection primes the PIC line, the alcohol we use to sanitize the ends, then comes the Rocephin, which is in this container that looks like a small baby bottle, then saline again to push it all through, and then heperin to keep the PIC line from getting clotted with blood. Sounds like a lot, but it’s really pretty simple. The Rocephin takes about 15 minutes to infuse. We just have to remember to take it out of the fridge around 1:00 pm so it’s room temperature.

After Kathy left, we went to get the good incentive spirometer. The one CT Surgical Supply carries is the same kind my dad used after his bypass, so I knew it was indeed a good one. We managed to make it home without my seriously maiming Stanley for being such a horrible, godawful passenger. A little yelling back and forth and we moved on. When he got home and tried out his newest gadget, he was just shocked at how difficult it was for him to move the piston. Now he has a real goal to work toward, and I hope his lung will actually clear up now. And I can’t wait until he can drive again.

Last night I think we just watched tv—yeah, we did. Medical Investigations and then the new Law and Order with Bebe Neuwirth, which is really good mainly because she is so good. I did a little bit of catching up on odds and ends for work throughout the day, but boyo am I falling behind.

Today, Saturday, I slept until 1:00. Stanley slept in until after 2:00. My goal was to start cleaning up the house and get to the library, but I just couldn’t do much more than fix a blog entry for a client, answer some email, check a few things, make sure S got his drugs and change his bandages for him, and make dinner. Making dinner was really cheating. Last night we had poached salmon with edamame and corn. Tonight I just nuked a couple of boca burgers and made some nachos out of flax/soy tortilla chips (from Trader Joe’s—they’re wonderful), black bean salsa, and low-fat cheddar cheese. I liked it. I am so tired still I am numb. And S still hurts when he coughs and I just want him to stop hurting all the time.

I found the description of one of the complications Stanley was hit with: acute pericarditis. This was the condition that caused the fluid build up that had to be drained. And the crises he had while waiting for the draining is called cardiac tamponade. Shit. What really bugs me is that Dr. R. said the Coumadin most likely caused Stanley’s pericardium to become inflamed, which led to the fluid buildup—yet S is supposed to be on Coumadin for another couple of weeks. It makes S nervous too, plus it’s been messing up his eyes. So we will ask Dr. R. if there is some other anti-coagulant he can use—maybe aspirin?

So it goes. I am so tired. Stanley is a lot better today, not coughing as much, a little more color in his face and hands than yesterday. So I’m happier.

posted by lee on 03/19/05 at 07:24 PM
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Thursday, March 24, 2005

whoa, where did the days go?

I can’t believe it’s so long since I last posted here. Last weekend we were just so wiped out we didn’t get much of anything done. Sunday and Monday I was sick—muscle aches, just couldn’t get warm. But I finally crashed Monday afternoon, told Stanley to wake me up in an hour and got up about four hours later. Missed Jeopardy—goes to show, I must’ve needed the rest. I feel fine now, just still very tired.

On Tuesday I was supposed to take a portrait of a client for the company website—and I totally spaced it. I never do stuff like that. She was nice about it and we rescheduled for Wednesday—and we didn’t forget. Wednesday was a busy morning, seeing three clients, then we were supposed to go see Dr. Robinson, but Dr. R got called in to emergency surgery, so that gig was postponed to Thursday (yesterday as I write this, but I still consider it today since I haven’t gone to bed yet). Lots of work shooting the new belt line for and working like crazy to get that up (should be up some time Friday). Took us 40 minutes to get all the garbage and recycling out Wednesday night (three weeks of newspapers and junk, ye gods). I’ll be glad to turn that job back over to Stanley.

Our visiting nurse, Kathy, came by Thursday morning and told us the Visiting Nurse Assn. is giving all of her clients to a new nurse starting soon. Like hell they are—we’ve already called the agency to pitch a bitch: we finally get a truly competent care provider (and we like her as well) and they want us to start over with yet another newbie? I don’t think so.

To Bridgeport Thursday afternoon. Dr. R. was happy to see Stanley looking so much better, said it was good to see the twinkle back in his eye. Or it might be mania. I’m not sure. Of course, things can’t be all good. Nope. Stanley has this weird problem with his eyes, vision problems and this transient blindness thing (amaurosis fugax). The nurse looked it up and said it might be a side effect of the coumadin, or it might be related to the tylenol, but whatever. Dr. R. set up a consultation with a neurologist then and there. The neuro doc happened to be in the hospital, and available, so we met Dr. Lisa Webb, Neurologist, today.

Dr. Webb did a battery of tests that I seem to recall have to do with establishing that Stanley has not had a stroke (he remembers the tests from his grad school days—he majored in psychology). She’s not exactly sure what’s what, but wants Stanley to have a carotid ultrasound to rule out blockages in the carotid artery, which could cause clots to form. Etc. There’s more, but I’m too sleepy to go into it all.

Dr. R also wants S to have another echocardiogram to make sure the ticker and valves are all working as well as they sound like they’re working. That’s scheduled for next Thursday at 9:30 am, so at least it won’t blow away the entire day. Monday we go see Dr. Disease about the staph infection (Dr. Zane Saul). And one day next week, when we’re not seeing other doctors or at Norwalk Hospital getting the carotid ultrasound (to be scheduled ASAP), S has to see Dr. R. again for another follow-up. Our dance card is quite full next week—the only day completely free of medical stuff (so far) is Tuesday. We have a client coming to see us (all the way from New Jersey!) that day—and we’re quite looking forward to meeting him as he’s been wonderfully patient about trying to get a meeting with Stanley.

We’re hoping we can go up to Boston to spend Easter with Maureen & Jeff and Kate and Ben. And Tattoo, of course. Stanley is not too crazy about having to be a passenger if we go up there. I’m not too crazy about him having to be a passenger, either, as this is something he absolutely sucks at. I was hoping he’d be ok enough to start driving again, but not with that eye stuff and the temporary dizziness—his timing is still off. Can’t wait until he’s off all these weird meds. He hates the Coumadin and will be glad to get off it.

What’s good, though, is we’re finally able to start getting involved in our projects again—damn it’s good to be re-engaging with the world. I’m a little fried about how much catching up we have to do, but I also know that I can only do so much each day. So I’m trying to do as much as I can to catch up and not to overdo it, and breathe. Now that the slush storm is over (we had three inches of SLUSH), we need to get out to walk more or S will never get his stamina back.

Oh, one irony: Stanley has to be on a low-fat diet, sez the doc, to managed his alleged high cholesterol. So we are, and really healthy stuff like beans and good things (but no vitamin K-laden greens like spinach), and we’ve both lost weight. Which is a great thing for me—but S cannot lose any more weight—he’d be invisible. So he wants to check his lipid levels and if his cholesterol is ok, he wants to eat ice cream once a week. A half gallon of it. As if.

posted by lee on 03/24/05 at 09:18 PM
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Thursday, March 31, 2005

stanley now has a serial number

cow aortic valve
A picture of Stanley’s cow valve, though this is an older model

Stanley received a letter today containing the model number and serial number for his PERIMOUNT Magna Pericardial Bioprosthesis (Model 3000). Comes complete with a user manual, serial number, and everything. The One- Hundred- Fifty- Thousand- Dollar Man. S, ever Mr. Half Empty, says there will probably be a recall. Wonder if the Lemon Law applies to heart valves? Yesterday his carotid arteries were ultrasounded and today his heart was echocardiagrammed. Sooner or later, we’ll find out the results. I hope we don’t hear the most dreaded words from a doctor’s staff: “Would you please come in and see the doctor today?” We’ll find out tomorrow morning when we see Dr. Robinson again (it was supposed to be some time this week, but he’s been doing a lot of emergency ticker work lately.) S is hoping to get off the rat poison any day now. His blood pressure is too low, so the nurse said he needs to drink a LOT more liquids than he has been. I don’t think it counts, but it gives S a good excuse to drink more of the Wicked Hot Chocolate I got for him. I don’t think it counts because it probably has so much caffeine it acts as more of a diuretic than it should. But it’s damned good stuff, and dark chocolate is supposed to be very good for the heart, right? Wicked contains: allspice, cinnamon, ground sweet ancho chili peppers, and smoked ground chipolt chili peppers. Oh, and real chocolate—not cocoa powder. I also got some actual bars of Jacques Torres dark chocolate, and ohmygod is it good. I read about his stuff in the New York Times in December, and FINALLY got around to trying it out. (I’d link to the article, but it’s already in the for-pay archives.) Ok, ‘nuff procrastination, back to work. (We’re getting there—almost caught up, only about three weeks behind now.)

posted by lee on 03/31/05 at 02:52 PM
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