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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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 www.charlieandgrace.com 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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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 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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Wednesday, March 16, 2005

chest tube is out, progressing nicely

Stanley on the ides of march 2005

Wonder when hospital “designers” will realize that bilious green is not a color conducive to making people feel better?

Anyway, Stanley’s chest tube was removed and he is in his 24-hour observation period. Thursday morning he gets yet another chest Xray, and they are going to install insert a PIC (Percutaneous Intravenous Catheter) line, which has to be done in radiology because it has to be threaded up the vein until the tip reaches the large veins inside the chest. The PIC line is so S can take antibiotics intravenously for six weeks—with a PIC line, he can do it at home. One side benefit is blood can be drawn from the PIC line. Stanley has so many holes from all the needles and the tubes it will probably be a relief for him not to have any more blood drawn via stabbing or puncture.

He is feeling much better. He can breathe, and the left lung cavity is drained though there is a lot of gunk inside the lung that still has to be expelled (via coughing, using the breath machine, breathing exercises, and walking). The Coumadin level is back at a rational number, though they decided to skip it Wednesday night because of the PIC line procedure. Guess they don’t want blood spurting out all over radiology without being able to staunch it.

S received more CheerGrams and just loved reading them. George stopped by again, and Jeff (who appeared as if by magic just when I needed a sanity check and help sorting out my questions), and lots of phone calls. Thank you, thank you!

Dr. Robinson, making rounds this morning, asked Stanley about why I was upset. Stanley explained that I need to be kept informed about what is going on. Dr. R. told Stanley to ask me to call him so he could talk to me about what’s going on, adding (Stanley says tongue-in-cheek) that he can’t have me terrorizing his staff.

So, in the early afternoon, I called his office and he asked me to stop up so he could talk to me between appointments. We met in this huge, well, boardroom it looked like, huge mahogany table, leather chairs, bookshelves lining the walls. Looks like it cost more to outfit than I make in two years.

He asked what I wanted to know, and I whipped out my list. He said he was between patients, so I tried to limit the list to the most important things to me, but he insisted that I go through it all, get it all off my mind. So I did. A brief mention of how Ryan blew the conversation last night, then I asked about missing 12 hours of antibiotics. R said S had so many antibiotics in him that they’d stick around for 12 hours. I don’t believe this, but I moved on (pointless to dwell on it since the new treatment started). I asked why S was put back on Coumadin if that’s what caused the lung crisis to begin with. R said it was for six weeks only, and therefore just two more weeks or so. I told him I was damned unhappy with how his Coumadin was managed, which was NOT managed, for it to hit 5, aka life-threatening. He agrees that it now has to be managed much more carefully since S is very sensitive to it.

I told him about my concerns when S is released—I don’t want to keep playing dial-the-doctor and cross my fingers, and how frustrated I was that we kept asking for help with the breathing and got nowhere. He said he focused so much on the infection he missed the lung problem. I asked what we were supposed to watch for to guard against it getting so bad again. Mainly having trouble breathing again.

I asked why S is on Zocor, when his cholesterol level isn’t that high and was probably, by now, well below 200. He said something about young guys with a blocked artery probably have problems with cholesterol, and at any rate, he prefers that S’s cardiologist decide yea or nay on Zocor. Fair enough.

I also mentioned the weirdness Stanley has been having with his eyes, but he said S hadn’t mentioned it during rounds. (Let’s see, the posse walks in when S is sound asleep, loaded with pain meds and still in pain, groggy, and he’s supposed to remember this?) R asked me to have S mention it tomorrow. (So I drew a big picture of an eye and Stanley taped it to his table, where he keeps his eyeglasses.)

We talked about a couple more things. Dr. Robinson listened to everything, answered my questions (or, in some cases, didn’t really answer them because there are no answers yet), assured me that all of my concerns will be addressed, asked me to talk to him when stuff is bugging me. Or to PA Dave, whom I trust the most besides Dr. R. I asked R why the nurses couldn’t answer my questions about stuff such as labs. He said because they didn’t know. I asked why they couldn’t look at the chart and give me the answer (I used to work in a hospital and I KNOW what goes into the chart—I had to chart on all my patients daily). He said that wasn’t the job of the nurses—their job, he said, is to administer meds and tend patients. I guess he has a weird idea of what tending patients means and this is reflected in his unit. I suspect he’s never been a patient in hospital, or at least not one where he wasn’t one of the gods. It really bothers me that he considers nurses medbots and not essential members of the team.

But, all in all, I feel much better. I feel like I can insist on and get a detailed, day-by-day treatment plan for when S gets out of the hospital—whom to see, whom to call when this or that happens, our next two or ten appointments, a visiting nurse. I’m hoping I don’t have to bother dealing with Ryan because I don’t trust him. But S should be out of there Thursday or Friday and, I hope, never have to see Richardson 7 again. At least not from the mattress side of the hospital sheets.

It was weird driving home tonight. I noticed the smell of natural gas while going through the western side of Bridgeport on I-95. It was really strong—I knew exactly what it was because I grew up in an area where natural gas is the cheap fuel so most widely used. I didn’t see any reason for it, though, so just held my breath while I got through it. When I got home, they had shut down that section of southbound I-95 due to that leak. I made it through just in the nick of time. Again. Don’t yet know what caused it.

I am so exhausted. But finally back to my more usual optimism.

posted by lee on 03/16/05 at 09:20 PM

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Tuesday, March 15, 2005

stanley is doing much better

Stanley had a much better day than he’s had in a long time. They removed the suction from the chest tube so he’s not tethered to the wall anymore. Though lugging a box full of fluid around is not exactly easy, he much prefers going into the bathroom to take care of things. His coughing is much better. Maybe they will take the chest tube out Wednesday and see how that goes, depends on the Xray results. He’ll be on IV antibiotics for six weeks after discharge. I hope, I really hope, that all goes well and I can bring him home on Thursday or Friday. He’s still in pain when he coughs a lot, and even when he’s not coughing a lot, but has gotten adept by now at making sure the nurses give him his meds in time. His nurse today told him he doesn’t need to take them unless he wants to. He says no more of this pain nonsense—he wants to stay ahead of it. I’ll be glad when he doesn’t need them.

Thank you for the CheerGrams! They do him so much good, he just lights up when the guy from Patient Relations walks in with the purple printouts! George and Claudia visited today, and tomorrow I hope I can bring Helene to visit, and he got a beautiful basket of plants from Ann and Jeff S, with primroses and kalanchoe and ivy and more. Alice calls and keeps him laughing and they compare hospital notes and discuss the differences between Norwalk Hospital and Bridgeport Hospital.

Right now, I’m pretty pissed off. The antibiotic regimen was changed, and Stanley was placed back on Coumadin. Only, nobody told us. Every time I asked a nurse for information such as Stanley’s lab results, I was told either I, or they, have to ask the physician assistant. Which is really bugging the shit out of me—how can we make sure he’s getting what he’s supposed to be getting when he’s supposed to be getting it if we can’t even find out what the hell is supposed to be happening? We found out the antibiotic regimen was changed when I went to ask the nurse because his once-every-four-hours IV was way overdue. And we had to ask the nurse to double check to make sure Stanley was actually supposed to be back on Coumadin.

What is the deal with the nurses not being able to provide us with information? Why can’t I see Stanley’s chart? That’s what I’m going to find out tomorrow morning.

PA Ryan did a really stupid thing tonight. When I asked for him to be paged so he could fill us in on what is supposed to be happening as far as Stanley’s treatment goes and why we weren’t told what is going on, he made some serious patient relations mistakes.

When I asked him how it was ok for Stanley to be off antibiotics for more than 12 hours—especially in light of all the proclamations that the least little bit of infection at this point will undo the surgeon’s handiwork—Ryan didn’t answer me, just said that’s what Infectious Medicine said to do. Infectious Medicine didn’t say anything about that to us when Dr. Lobo examined Stanley. I was there, I would’ve asked him about it.

I then asked PA Ryan (a physician assistant is, from what I can tell, analogous to a field medic in the military—enough training and know-how to do nearly everything an MD can do, but under the supervision of the MD. Not a doctor. In Connecticut, it takes 60 hours of training and a Bachelor’s degree plus passing an exam to be able to practice as a PA. It’s like majoring in doctor the same as one would major in nursing or teaching. Only PAs are required to train constantly in order to keep their certification.) why we were not told of the med changes. He then told me that we did not need to be told about every order written. I asked him why not. I told him that he, PA Dave, Dr. Robinson, Case Manager Tracy, and the nursing manager I met on Monday all assured me that we’d be kept informed of everything. He said, “I promised that?” Yep, you did, I told him.

Then he had the extreme stupidity to tell me that I didn’t need to worry about Stanley’s meds—it was all being taken care of. That’s when I blew—but I didn’t yell or use abusive language, just said, essentially, trusting them the last time led to missed meds ...

How many articles have you read that tell you to double check everything they do in the hospital? Bridgeport Hospital is not even computerized—why the hell would I trust them?

... then I asked him again why we weren’t informed of what’s going on, and why Stanley didn’t get the chest Xray we were told he was to get this afternoon after they removed the suction, and why his IV wasn’t changed when it was supposed to be and why, for god’s sake, do the nurses have to get permission from a PA to tell us our own medical information?

PA Ryan got pretty nasty, and said (paraphrasing here) “Do you expect one of us to tell you every time we write an order?” Me: “Yes. Or if not you, the nurse should tell us. I want to be able to walk on to the unit and ask Stanley’s nurse what in store for today, and I want him or her to be able to tell me. I want to know the results of all the lab tests and what they mean. I want to know what’s going on and what’s going to happen.” This is my right, according to the hospitals own Rights and Responsibilities Statement. Unless is just a bunch of bullshit they print out because they’re required to.

Ryan then tells me to make an appointment with Dr. Robinson to sit down and go over everything. Or to show up when they do rounds. Why can’t I just get this information from the nurse, who has been trained to provide this information to me? (No wonder so many good nurses are leaving, if they’re no longer allowed to do what they are so good at doing, which is caring for the whole patient, why would they stick around?)

Then PA Ryan, who should’ve known better, said, “Why are we talking about a trivial antibiotic change at 11:30 at night? The time I’m taking talking to you about his is time you are taking me away from patients who need my critical care.” Wrongo, buddy boy. That just took extreme frustration and pushed it over to anger. Let’s see, Stanley is no longer close to dying, so he no longer matters? Like PA Ryan had anything to do with it? First he patronizes me, then he gets arrogant on me. Some bedside manner, eh?

Ryan, young though he is, should have had the sense to simply say, “I’m sorry you weren’t told of the changes, this is what’s going on and yes, it’s safe for your husband to be off antibiotics for 12 hours, and I promise I/we will be better at notifying you of changes henceforth.” He could’ve been lying through his teeth (about being sorry and about not doing it again), but it would have appeased me for tonight, taken three minutes instead of ten. Stupid, stupid.

I will tell Dr. Robinson what happened, and the case manager, and the nurse manager, and patient relations and my insurance company (which stresses we should be assertive about our care) if need be. Bottom line is, I want answers when I ask, and I want to know what’s going on without getting bullshit about having to get a PA’s permission before I can be told what’s happening.

I know I am still furious that we couldn’t get the help we needed when we first started asking for it, and that things had to get so bad for Stanley before we could get anyone to listen. I told all this to PA Ryan on Sunday—I’m sure Stanley’s chart is flagged with a message essentially warning staff to watch out for Stanley’s bitch of a wife—though I’ve been very careful to be polite. (And look where that got me.) I just am so tired of begging for help and for answers and I cannot afford to just trust them with Stanley’s care. I might not be able to get anywhere with this, but it won’t be for lack of trying.

Damn it’s been a long day.

posted by lee on 03/15/05 at 10:22 PM

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Monday, March 14, 2005

three liters and counting

When I got to the hospital this morning, Stanley was getting an echocardiogram. The nurse kept telling me he’d be back soon, so I read the paper, paced, bugged the nurse again. Jeff called me from outside of Hartford and said I should ask the nurse just where he was and go find him, so I did. She tracked him down in Xray, where they assured her he was on his way up. Ten minutes later, he was back in his room not resting, uncomfortable. He spent more than three hours shuttling from the tenth floor to the third floor and then back to the seventh floor. I was ready to file a missing person report.

Stanley said last night he awoke about 3:00 feeling as if he was drowning, in a panic and getting more and more agitated. He rang for the nurse, who came down and gave him his pain meds and sat with him, soothing him until he could go back to sleep. I don’t know what her name is, Stanley couldn’t remember, but many thank yous to her (I will find out who it was tomorrow if I can).

The surgeon and PAs Dave and Ryan huddled over Stanley before he went up to get the ecg and said that his coumadin was at a level where it was safe to insert the tube to drain the fluid from around his lungs. And that they would be doing it in the afternoon. But, as bad luck would have it, there were a couple of emergencies and the docs spent the entire day in the emergency room (Bridgeport Hospital is a regional, tier 1 trauma center, so I was not surprised.)

Jeff, our brother-in-law, came down from Natick to help me cope with things. He told me the ropes of dealing with things in the hospital since he’d been helping care for his brother for, literally, months at Mt. Sinai in New York City and before that, dealing with Maureen through her hospital stays. I’d already listened to him and to Maureen and met one of the case managers in the morning and filled her in on my concerns—all of them. I’ll repeat it all to Stanley’s other case manager when I see her Tuesday as she doesn’t work Mondays.

At any rate, having Jeff there today really helped me a lot, calmed me considerably and by the time he left to go visit his brother, I stopped feeling like I was going to break down and sob unstoppably at any second. That was exhausting, so having that pass after feeling like that for more than five days was like being cured at Lourdes. And insisting with everyone I met with about Stanley’s care that his pain be managed adequately this time seems to have helped, plus Stanley has learned to be more insistent about getting the pain dealt with before it gets out of control. Yesterday, in the ER in the early afternoon, it took me over an hour to get someone to help him with the excruciating spasms he was having—I think they only helped him when they realized I was about to turn into a berserker if they didn’t.

The afternoon got progressively worse until, around 6:30, I started bugging the nurse again about when the hell S was going to get the fluid drained. “Soon, soon,” which I’ve learned mean “I really don’t know, maybe some time in the next 24 hours” in hospital talk. After Jeopardy, when Stanley was starting to panic again and was feeling even more like he was drowning, I went out again in search of the nurse to get a real answer, and ran into Dr. Robinson, who was on his way to check on S and asked me if the chest tube had been inserted yet. When I told him no, he went into see Stanley, and then told me PA Dave would be in to do it soon.

About 8 o’clock, Stanley’s nurse, Andrea, gave him a shot of morphine and said they’d be back in ten minutes to do the procedure. A half hour later, they threw me out and proceeded to suction the fluid out of the space around his lung. Dr. Robinson went in to monitor it at one point, the later came out and was please that there was no pus in the fluid. He said it was sort of what President Clinton was going through, and said something about—and I probably have this totally screwed up—inflammation of the pericardia ... I don’t really know. I couldn’t hear him that well, he was tired, I was tired—I will ask the PA to explain it more carefully tomorrow so I understand just what happened.

Eventually, they let me back in the room. PA Dave said they drained nearly three liters of fluid from around his lung, which was flat as a crepe from all the pressure. Stanley said it was the weirdest sensation he’s even gone through, feeling his lung reinflate. When the suction was strong, he said, it was pretty painful, but he said the difference is like day and night. He feels like he’s starting to be able to draw real breaths and doesn’t feel like he’s on the verge of drowning any more. He was so, so much better.

The most amazing thing to me was that his coughing continued a often and strong as before, but it is finally productive, and it doesn’t hurt him like it did before (though he says that might be the morphine talking, especially since he got more morphine during the procedure). PA Dave said the lung will be expelling anything trapped in there over the past few days, so he will be coughing up a lot of gunk. Gross, but damn I was happy to hear that. Dr. Robinson warned that there is still plenty of pain to come as the lung bangs against the chest walls and gets back to normal.

So the prognosis is that he’ll likely get the tube out by Wednesday&yIL;[’ (the cat is trying to contribute)—Tuesday he’ll get the portable setup so he can move around a bit (like go to the bathroom). And he’s supposed to be seen by Dr. Infectious Diseases about the staph infection (it was supposed to happen today, but I didn’t know that so I couldn’t nag to get it done). Maybe some time Tuesday we’ll get an estimate on when he can come home. Dr. Robinson says he’ll bounce back pretty fast—I believe that because S was doing so well before the fluid/infection stuff happened, plus his valve and bypass are nearly healed, as well as the sternum.

Alice stopped by the house to take Ginger out for a bit and left me some sushi from Wild Oats for when I got home—it was great! And Jeff stopped by before he headed back to Natick to take Ginger for a romp at Taylor Farm and to play with Twitch a little, then stopped back at the hospital. I wouldn’t have minded if he’d thought to check the fridge for something to eat and found the sushi (he, Kate, and I are the only ones in the family who like it), but I was glad he didn’t :} George came by the hospital today and as usual Stanley was delighted to see him even though laughing made him cough a lot—it was more than worth it, S said.

The patient relations dept. delivered the CheerGrams friends and family sent via the hospital website and Stanley loved getting them all, read them twice. So thank you so very much for sending them.

Now it’s time for me to catch some sleep. I’m going in a little later Tuesday morning because I need to get a couple of work things done.

posted by lee on 03/14/05 at 09:56 PM

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Sunday, March 13, 2005

22 hours in the er

A bed finally opened up for Stanley today—he spent 22 hours in the emergency room. Not just any ER, but the ER of a regional trauma center for an urban population on a Saturday night. Stanley said all the commotion and the pain and psychotic breaks of the other patients mixed in with his already drug bizarre dreams to create a surreal night he’s not likely to forget.

It seemed to take so long to get a room. There was one point where S was writhing in pain and it was taking forever to get his pain meds, the sound of the blood pressure cuff kicking on every 15 minutes was the only thing that told me time was passing. The pressure cuff was how S kept time last night.

But he made it up to Room 729, just a few doors down from the room he was in the last time, at long last. And had a wonderful nurse, Donna M., Sunday from admit until 11. We were lucky, because she normally doesn’t work that shift, but was covering for someone. His ER night nurse, Rowena, was also great. She managed to secure him a real bed so he didn’t have to endure those awful ER cots all night.

I had a list of questions and, well, insistences this time. I wish I’d known more about what to expect and what I had to push for the first time he was in. I wish I didn’t have to use this hard-won knowledge. I got most of the questions answered—rest will wait for the surgeon tomorrow. I will insist on meeting the case manager first thing tomorrow instead of not meeting her until the last day. I insisted that S NOT be awakened and put in a chair at 4:00 am like he was last time and was promised this would not happen. I insisted that his pain be better managed this time—we’ll see how that goes. And I want to know what his tests say, his treatment plan, and all that stuff. He’s going to get much better care this time—even if I need to call nurse managers and hospital administrators and ombudsmen and Oxford for help. And this time, there is going to be adequate medical followup when he is discharged—no more of this tag-the-doctor crap.

I guess I’m still pretty pissed off. My sister cautions me to be very assertive, but not rude. I have no problem with the assertive part (yes, I know that’s an understatement), but I have to watch it with the sarcastic comments I tend to make when I’m really angry and frustrated since that won’t help matters at all.

Thank you for the phone calls and messages—they are appreciated so much. If you want to send email directly to S, you can send CheerGrams from the Bridgeport Hospital website, which the patient relations department prints out and delivers. He was really happy about getting them the last time he was in. His full name is Stanley Thompson.

To bed, perchance to sleep ...

posted by lee on 03/13/05 at 09:47 PM

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Saturday, March 12, 2005

back to the hospital

I just got in from taking Stanley back to Bridgeport Hospital. He is being admitted again because there are complications from his surgery. He has a staph infection that needs to be treated very aggressively so that it doesn’t get to his new valve, which would screw things up royally. So far, it’s above his sternum and doesn’t seem to have spread anywhere else. This infection is one he picked up in the hospital during or after the operation.

But wait, there’s more. His left lung is filled with fluid and needs to be drained, and there is fluid around his heart, which the doctor said is “normal.” But, they can’t drain the fluid in his lungs yet because his coumadin level is way, way too high, which means his blood is way too thin and he would bleed too much from something as invasive as opening up another hole in him for another tube. So they’re giving him Vitamin K (Stanley calls it liquid spinach) to get the coumadin level down.

Right now, he’s in the ER waiting for a bed in telemetry (I have no idea what telemetry is, just know it’s on the 7th floor)—they will probably move him in there in the morning. He had a chest x-ray and a CAT scan and lots of blood tests. His hemoglobin count is lower than it was yesterday (“He’s a little anemic, but that doesn’t explain the pallor,” said the surgeon), but his white blood cell count is also lower, which is a good thing. He’s on oxygen because his level is low.

Don’t know how long he’s going to be in the hospital—sounds like days from what the doc was saying.

Stanley says the fluid in his lungs explains a lot of things, like why it hurts on his right side but not his left when he takes deep breaths. He wept when I told him today that I had to take him back to the hospital, he is so very tired and in such pain and is so weak, but now that he’s there and knows what’s going on, he’s relieved though very upset. I’m relieved that he’s being taken care of, and I’m upset about it, and very, very angry that it had to get so far. It seems that there should be more than a coumadin level check once a week post-op—there should have been, at the very least, a weekly checkup by a doctor to check his lungs and blood pressure and whatever.

And I don’t know why Dr. Robinson couldn’t have ordered more tests on Wednesday when we took him there to get the infection looked at, or had him admitted yesterday ... I just know this should have been caught sooner. And, I found out, there is something they should have had Stanley inhale pre-op, which would have prevented the staph crap from happening. I’ll have to find out more about that and ask why it wasn’t done.

So I’m scared, and pissed off, and just hoping they take care of him properly this time. Now I need to get some sleep—tomorrow is going to be a long, long day.

posted by lee on 03/12/05 at 10:55 PM

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Friday, March 11, 2005

pooch, puss, & pus

Ginger, Stanley, and Twitch

We went back to see the surgeon again today. He told us Stanley picked up a staph infection while in the hospital, that lay in wait for the opportunity to turn into a bit of a monster. All I can say is I admire nurses, doctors, and paramedics everywhere for their fortitude in dealing with oozing, pus-filled wounds. Fortunately, there is almost no pus left—just ooze. I just wish it would go away altogether so Stanley wouldn’t writhe in agony every time he has to cough (which makes the open wound ooze even more). My bandaging is much neater than Dr. Robinson’s, though, I have to brag. Stanley’s fever was down to 99 degrees today, so that’s another good sign. Dr. R. is worried about how pale Stanley is, so he ordered some blood test done. We’ll get the results on Monday. I suspect he might still be pretty anemic.

It’s been very strange today. Stanley is totally sapped, with fighting off the infection and healing. So he’s been going away much more frequently than he ever has since he got out of the ICU. Fading in and out doesn’t describe it at all—there’s no fade. It’s binary. Either he’s here or he’s out, mid-sentence, mid-bite, mid-thought. It was weird the first time it happened, he was nodding in agreement with something I was saying and then he was zzing away.

I snapped this photo with our new little Vivitar we got via Woot for $100. A total impulse purchase, well, kind of, we needed another digital camera, well kinda sorta (we wanted it). All three of my creatures curled up on the loveseat, Stanley in one of his zero moments. The cat is on Stanley’s lap, honest! I know it’s hard to see him. Ginger is just so bored. I think. Do dogs get bored?

Today marks three weeks since the operation. The infection really set him back—all the plans he had for learning all the ins and outs of CSS and reading all those novels, well, maybe next week. He hasn’t been able to concentrate. I read an article about how pain and healing just consume you. I’ve never been laid up and in pain for days and days so I really don’t understand what it takes out of you—the worst that’s happened to me is a broken wrist and later I cut off the top of my index finger and had to get it rebuilt. Neither all-consuming healing/pain events (though the finger stuff hurt like the dickens when I injured myself and then post-op for a few hours).

I’m looking forward to sleeping until I wake up at whatever time on Saturday morning (or afternoon), not having to be anywhere. The only gotta-dos this weekend are a trip to the library to return books and a trip to the other library to pick up a book Stanley asked for via inter-library loan. Crap snow again Saturday, so I’m not very anxious to be on the roads again. And this weekend I want to make sure I carve out a couple of hours to finish setting up a blog (mainly because I’m looking forward to reading it!) (Yep, Candy, your journal—I haven’t forgotten!)

It amazes me how much TIME taking care of someone takes. And I’m happy to do it (especially considering the alternative). And how focused I get—today I was so worried about getting Stanley to Bridgeport Hospital on time I wouldn’t stop to look at something S was showing me. And I felt bad about it. Feck.

Today I was ready to work on this unexpected project that cropped up at the last moment that has to be done. Should’ve taken me maybe 90 minutes. But I had to fool around for two hours trying to figure out why the hell Word wouldn’t load, reinstalled it, went nuts (it worked last week!) Then, after I’d given up hope and downloaded OpenOffice, I remembered that I installed the latest Bullfighter plug-in—aha. Uninstalled that, and Word popped open again happy as a clam in muck. (Gotta figure that one out—too handy a plug-in to do without!)

Oh, cool, William Shatner is on Jimmy Kimmel. Gotta watch it.

posted by lee on 03/11/05 at 08:26 PM

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