My parents know now. They don't read this blog, anyway, but they know I have to go back.
I left off on my way to the hospital for the third admission in three months...
I was direct admitted to the Pulmonary Unit (8th floor), under Jim's care. I don’t know how he got me a bed that fast, but it might be best I not know who he made cry to make that happen. (I am grateful for this.) (I feel a little guilty about that, but not as much as maybe I should.) I packed my shit, and told Mark to pack his computer and magazines, and back we went. Jim hugged me when I arrived. They were still cleaning the room, so I hung out outside. We had my initial consult in the hallway, with him, and with Infectious Disease. Dr. Hermione was the fellow and I liked her immediately; Dr. Kristine was my attending. She's pretty great, too.
I had Staph capitis. And you do, too. It's not a problem for you because it lives on your skin, quite peacefully. Inside the body, it becomes this raging thing that happens to leave slime trails on internal hardware. Not unlike EXACTLY the internal metal bars I'd just had put into my chest in April. (There's a more professional term than 'slime trail', but I'm making a point here.) (Ask Dr. Wikipedia if you want some real medical advice.) (That was sarcasm; you knew that, right?)
Jim wanted me tapped a third time, to get all the fluid and the bacteria swimming in the fluid out. Dr. Kristine wanted that, too. I stayed the night, after they had taken blood cultures. I was not excited about getting tapped: more pain. Initially, I could tell Jim was puzzled because he’s done hundreds of taps, and people just don’t have pain after the lidocaine kicks in. But he was right about the necessity of it, and the fluid had to come out. He said he’d see if Interventional Radiology would do it Thursday evening or early early Friday morning…and if it wasn’t done by the time he got to the unit, he’d get it done.
My night shift nurse was Jenny, and she was outstanding. (I nominated her for a Daisy award.) I wasn't sleeping well, but she everything she did or did not do for me was somehow magically the right thing to do. She was compassionate, and kind, and I felt weirdly protected. It's not like I was consciously afraid of anything in the hospital. If anything, the second admission went better because Jim was running things. I knew he was taking care of me. And Mark was home and with me, and that felt normal and good. Chase was home. (He did come see me in the hospital because of some car-switching issues….advantages to having a 16 year old with a license…) Anyway.
Ultimately, though I was a terrified mammal in pain who was being threatened by more needles.
But Jenny B on nights was a balm I needed. She was fantastic. I was having to take more oxycodone than I did at home (maybe three tabs of 5mg a day)….those beds are fucking horrible. UCH spent thousands of dollars on constantly shifting air beds. This is great if you’re 90 years old and you might get a pressure ulcer. But if you’re 44, and you just had chest wall reconstruction, YOU DO NOT WANT YOUR RIBS TO BE MOVING INDIVIDUALLY. This is BAD.
Friday, I still got up around 5.30 a.m. because I wanted to be clean and my teeth brushed before the onslaught of day shift arrived. I know how hospitals work. Phlebotomists start early, and who goes back to sleep after they’ve just been jabbed with a needle? Nobody, that’s who.
One of Jim's fellows tapped me that morning. I had Mark to hold my hand, which was so much better. With the third tap, the pleuritic pain really hit. I felt every bit of it. The guys (i.e. Jim, the fellow -- sorry, forgot his name cos he isn't one of my fellows, and the resident whose first name I forget, but he was really a great guy) did not understand why it was so painful. Got no idea. It just was. Jim looked fairly horrified through it, and wanted to give me Fentanyl. Or ice cream (cos I'd asked for that at one point.) The fluid had to come out though. I called it when I couldn’t take it anymore, with a simple, “We’re done.” And they stopped. Another 500cc? or so?
All told, they pulled almost three liters of fluid out of my chest cavity that week. That's more than six and a half pounds of fluid. Which meant that since the date of surgery (4/21), I'd lost 12 pounds in six weeks. No wonder my liver function tests were screwed up. (An obligatory liver ultrasound done that day offered no alternate explanation....i.e. my liver was fine.)
Despite how unpleasant it was, I do think it was harder on Mark than it was on me. He stood there and had to watch while I dug my nails into him.
When the guys were done with me, there was still a little fluid left. I hoped to just absorb it like normal people do that have small pleural effusions. Jim planned follow up CXRs.
Friday midday. My coworkers came to see me. It made me so happy. I don’t know why, but it felt like a car full of clowns came in and they made me laugh. I felt loved. My boss came to see me, with the floor’s assistant manager, who I knew a little and chatted up at the Nightingale dinner. Diana, my favorite kidney doc and mentor and friend and …yeah. Diana visited. (Everybody who poked their head in when she was there, she had to say, “It’s okay, I’m not here for a consult.”) Jim was there, often. Not necessarily to give me any news, just to, I don’t know. See how I was, and visibly worry. Which made me feel safer.
Mark was sleeping almost as badly as I was, and he stayed until I insisted he go home and sleep.
At some point, Jim talked to Marianne, Dr. J's nurse (I don't think he could get through to the surgeon directly). I’m not the first pectus patient to have an empyema (a pleural fluid collection full of cooties)….usually “empyema” implies chronic pocket of munge, but the technical definition fits what I had. Apparently the course of care is six weeks of IV antibiotics, and then a full three YEARS of oral antibiotics, until the bars come out. (Keep in mind....I have metal hardware in my left shoulder, too.)
This is what ID wanted to do, assuming my blood cultures were clear. They wanted to be sure I wasn't septic. I had zero symptoms of sepsis, but this is what they do.
Jim tried to get me bounced out of the hospital, but ID wanted to keep me until 48 hours after the blood cultures had been drawn. Hermione obtained the most comprehensive history and physical of any physician I’ve ever observed. And I liked her humor. (“I want you to stay in the hospital for no less than 48 hours.” <insert my resting bitch face here> “You liked me better yesterday, didn’t you.” Yes. “I am actually sorry about that, but I still want you to stay.” Okay, fine.)
The antibiotic sensitivities came back, and they eventually caved a little bit to the 48 hour rule....and put the PICC late Saturday (everything but my liver function tests were dead normal). They started me on IV Ancef, three times daily.
I was still having some significant pleuritic pain. Saturday was my worst day…because of the new and exciting pain on top of the achy pain I’d gotten used to, the new nausea from the shiny new antibiotic bag, and the sleep deprivation and stress. I moved my carcass to the couch (see above re: pressure-reducing torture device) and lingered there. Because patients do not sleep on day shift.
Bex faced her hospital fear and came to see me for a long time. I’m not sure how long. It was absolutely my worst day. Mark was there, reading, and occasionally chatting with her. She rubbed my forehead for like an hour. Or more. I don’t know. I was so nauseated (Ancef, increase in narcs), and in so much pain. Not kidding. She rubbed my head and my shoulder while I laid on the couch, mentally keening through waves of nausea and fear. (Why fear? I don't know. Cos I'm a mammal and there's needles and there's bacteria growing in between my fucking lungs and chest wall and it leaves slime on metal.)
Love Bex. Told her I’d return the favor someday. Intend to.
My husband is the most patient man in the world. This has put him through something awful, too.
It got a little bit better, eventually. The resident came in to see me often, too. I think I was interesting, as a case. Or, equally possible, Jim instructed him to watch me. (Which, okay, made me feel better.) He talked to me about the new weird pain sensations (that were scary and inexplicable at first), and got my walking papers (discharge summary).
And this is when we got to see the radiologist report of CT scan.
And I'm going to pause here...because. This isn't all that fun of a story to tell.
But I will come back to finish it.