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.

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