Monday 1/19
I think this was the day they started trying to get me to sit up in a chair. Actually, first, they wanted me to get up and walk a bit. I only made it as far as the chair beside the bed, though. I was, however, able to sit there long enough to eat some meals. But I didn’t do any actual walking until I was out of ICU. The first time, I was still attached to a bunch of drains and tubes, so they had to load up a wheelchair with all sorts of things, including an oxygen tank. I then pushed that around while Kyle pushed the IV pole, I think. After a couple of days, though, I was down to few enough tubes that everything could be attached to the IV pole, allowing me to stand upright and push that, rather than hunching over to reach the wheelchair, which was nice. At first I could only manage one circuit around the nurse’s station, but I eventually got up to three.
Tuesday 1/20
I got moved out of ICU today, and it was also the only day I had a nurse I really disliked. Fortunately, she was the ICU nurse, so I only had to deal with her for a few hours, but she really bugged both me and Mom. She’d come in to check my dressings and not have any idea where the incisions were, stuff like that. I really don’t think she’d even looked at my chart, which doesn’t really inspire a lot of confidence. But like I said, I got moved to a room on the 5th floor that morning.
Unlike the ICU room, these rooms were tiny, and there was really only room for one visitor at a time (there was one comfy chair beside the bed). But with folding chairs from the hallway, we fit in more. Most of the time, Mom and Kyle were both there, and the comfy chair seemed to go to whoever was reading aloud at the time, though Kyle got it more often as he got sick. When T and BJ came to visit, though, it got really crowded. And if Michael was there, or when five or six girls from the RS came to visit, it was like clowns in a car. But I loved having people there—it was great to see and talk to people, even though I got really tired very quickly. And I had tons of flowers without really anywhere to put them. By this time, actually, my first set of flowers had mostly died, but I got more, especially after the second surgery, and they lived throughout my stay. We finally stashed most of them on a high shelf and on the bedside table, but they were pretty well crammed up there.
Wednesday 1/21
Today they removed the drains from my neck, as well as one of the chest tubes. Dr. Gibb came in and took the drains out, first snipping all the stitches (which was very uncomfortable, but not too painful). One of the drains just went straight through the front part of my neck, sticking out on both sides, and everyone agreed it looked really odd until he took it out (my neck had been all bandaged up, so it hadn’t been visible before). Then the nurse took out the chest tube, and that was really weird. She had me take some deep breaths, in, out, and then in and hold while she pulled it out. I never got used to the feeling of having great huge lengths of tube pulled out of me. It’s truly bizarre, and I don’t think I can describe it well, just because you don’t normally feel such things moving around on your insides. Which is as it should be.
Friday 1/23
Today, they took out the rest of my tubes, as well as taking me off the morphine. I’d been taking periodic doses of Darvocet, and I didn’t particularly like it; it made me a bit nauseous and feverish, but not as much as the other things we’d tried. So when it came time to lose the morphine, that’s what we switched to. They were these not-humongous-but-not-tiny-either bright pink pills, and I had the hardest time swallowing them. (I couldn’t figure out why, as I’m a real veteran at swallowing handfuls of pills at a time, but I later realized that my throat just wasn’t up for swallowing much. I shouldn’t have been surprised; I didn’t even have the lung capacity to drink out of a straw, but I sometimes forgot what an ordeal my body had been through.) For the most part, the pain that drove my need for pills was in my back, at that thoracotomy incision. They weren’t kidding when they said that would be painful and take a long time to heal.
Because my hematocrit was low, Dr. McCann said I may need a blood transfusion. But they didn’t want to do that, obviously, so they had me start taking iron supplements and folic acid, which were supposed to help my body build more red blood cells. Fortunately, they worked, and I didn’t ever need a transfusion.
The other really exciting thing was that I finally got to take a shower, now that I no longer had any tubes in me. I’d been having “baths” of a sort all along, of course (really, just getting wiped down with hot soapy washcloths), but my hair was absolutely disgusting by this point and I was thrilled that I was finally gonna get to wash it. They put some large pieces of plastic over my PICC line hookup and the bandages over the chest tube holes and I was good to go! I’d expected it to be somewhat difficult and awkward, as my mobility was drastically reduced (and I was right). I was shocked at how weak I was, though. I spent almost the whole time sitting on the stool in the shower, but I was completely worn out and shaky afterward. I got out and collapsed into a chair while Mom helped me get a gown on and brushed my hair. She dried it as best she could with a towel, and I stumbled into bed. It would actually be another couple of weeks before this got any easier.
Saturday 1/24
This was a horrible day, and it actually started Friday night. I didn’t have bad morphine withdrawals or anything, but now that Darvocet was my only pain med, I was taking lots more of it and it made me really sick. I was feverish feeling (though I didn’t have an actual temperature) and nauseous, and it just got worse as time went on. I woke up several times in the night (not unusual—I never slept well in the hospital), but this time from horrible nightmares and in a cold sweat. Seriously, my sheets and gown were soaked, and that’s just miserable. I also had this horrible-tasting phlegm in the back of my throat that wouldn’t go away, so I was constantly spitting into kleenexes, trying to get it out of my throat. Finally, around 4 am, I rolled over and hit a button on my remote, turning the TV on. Unfortunately, the only way to turn the TV off was to click through all the channels until you got to “off.” Realizing this, I figured I’d see if there was anything good on (this was the first and last time I’d had the TV on during my entire stay) to get my mind off the nightmares. I found a movie on Lifetime, but it didn’t really help: it was about this woman and her friend who were on trial for killing the first woman’s abusive husband. After a half hour or so, I decided to look for something a bit better and found Angel. This wasn’t exactly happy, either; I mean, it is about vampires and demons and such. But at least it was a lot less real-life. After a couple episodes of that, Charmed came on, which was much better and familiar to boot (T and I used to watch this silly show all the time). I eventually went back to sleep around 7 for a bit.
I was awakened a bit after 8 for breakfast, but I just left it on the tray. I was too tired and too nauseous to eat anything. Eventually, though (around 9 or so, I think), I decided I should eat. I took one bite of my scrambled eggs (the only thing that looked remotely appetizing) and promptly threw it up. And kept throwing up, despite not actually having anything in my stomach anymore. I paged for a nurse so I could get something for the nausea and also asked to talk to a doctor. I was so scared! We’d been talking about me going home in a few days, and here I was, feverish and vomiting. Worst of all, my throat was hurting and felt swollen, and that terrified me. Finally, the doctor came in. He reassured me that my blood work was clean and didn’t indicate any remaining or recurring infection. I was just fine. “But my throat hurts and is swollen!” I said. I think he got frustrated at this point. “Of course it is! We scraped your esophagus raw from your throat to your stomach! You were gonna die!” He encouraged me to be patient while my body recovered; it had, after all, been through a lot. I actually still remind myself of his words when I get frustrated with the pace of my recovery.
I’d called Mom soon after I threw up to see if she was going to be there soon. (I considered calling Kyle, but he’d been feeling not well the last few days, and I knew he needed his sleep.) Mom said she’d be there as soon as she could, and she got there shortly after I saw the doctor. I was given a dose of Phenergan for the nausea and spent much of the day sleeping on and off and generally being miserable. I stopped taking the Darvocet, and once it worked out of my system, I started to feel much better. I still wasn’t up for anything, though, and opted out of doing my breathing when the respiratory therapists came in or going walking.
We now had a tough time figuring out what to do about my pain, especially given the bad reactions I’d had to both Percocet and Lortab earlier. We found that Toradol (the dr. said it’s basically a massive dose of Motrin) did a decent job of reducing the pain to where it wasn’t so bad. The unfortunate part was that it wore off before I was able to have another dose, so when I got really desperate, they gave me supplemental morphine.
Sunday 1/25
Today I finished up with my antibiotics and they took out that PICC line, which left me completely unconnected to any sort of machinery for the first time in almost two weeks. They also removed the last of my bandages, so I was clear of those, too. I’d been on three different antibiotics (they just rotated them on the IV) ever since I got there, and it turns out that they were contributing a fair amount to my general feelings of “not good.” This had actually been suspected for quite some time, but there was no way they were gonna take me off them. The point is that I started feeling even better than I had been, which was nice. And when Kyle helped me walk around the nursing station, I didn’t even have to push an IV pole! It was wonderful.
In our discussions with the doctors about me going home on Monday or Tuesday, Mom convinced me to try the Lortab again. We were fresh out of options for pain control once I left the hospital, but I was still going to need something more than just ibuprofen. In hopes that my original bad reactions had been a factor of all the other drugs I was on/had recently taken, I decided to give it another shot. It worked great—no hallucinations or fever or anything! This had been a major concern for my going home, but now it was taken care of.
Monday 1/26
I was well and truly terrified at the idea of going home, and I was still uneasy when Dr. McCann came in this morning and told me that my white count had stayed down, even after we stopped the antibiotics, and I was free to go home if I wanted. He also gave me the option of staying another day if I felt like that was necessary. I was torn and didn’t know what to do, so I asked him what he would do in my place. His instant response was that he’d go home, where it would be much more comfortable and no nurses to harass him with their constant vitals-checking. I decided to be brave and take the plunge, and they got started on my discharge paperwork. I texted Kyle (and T and Michael) that it was the day for going home (he hadn’t arrived at the hospital yet) and he came up to help.
Before I left, though, I had bunches of questions for Dr. McCann. For most of my stay in the hospital, I was too out of it/tired/in pain to really care what was being done to me. Doctors and nurses came in and said “we need to do this” or “take this medicine” and I said “okay.” I didn’t have the energy to even wonder why, let alone ask questions. This is very out of character for me, though, and when I started feeling better, I wanted to know more, so I asked Dr. McCann all kinds of questions. He said they finally identified the bacteria as fusobacterium, though they still had no idea how any of this started. (The best I can figure out is that my original sore throat was probably just a normal, viral sore throat, like the dr. at Urgent Care said, but then my throat got irritated or something, allowing the bacteria in to cause problems.) He said that he had only given me a 50% chance of living (Dr. Gibb had earlier said 75%). In his entire career, he’d seen three similar cases. One patient was young and had survived. The other two were older (he didn’t say how much older) and hadn’t made it, so he mostly attributes my survival to my youth. By this point, I’d heard from a few people that I had been very close to death, but I didn’t understand how exactly that would have happened, so he explained. With an infection as large as I had, they had actually been waiting for it to get into my bloodstream (that’s why all the rush when I first arrived at the hospital). With it progressed as far as it had, they just expected it to happen. But it didn’t, fortunately, because that means I would have gotten septic, which tends to kill off your organs and then you.
Anyway, we eventually got all my stuff and me wheeled downstairs. I rode home with Kyle b/c I think my car (which Mom had driven) is lower to the ground, so it’d be easier to get in and out of his. It was great to be outside and see stuff again, even if it was very-familiar Provo. But it snowed! Just for me! So that was also gorgeous. When we got home, I settled onto the couch while Mom and Kyle put stuff away and whatnot. I actually got out my computer for the first time in weeks (I’d had it at the hospital and used it for music, but nothing else) and chatted with some people. But that actually wore me out pretty quickly, and it was weird how my fingers had forgotten how to type. Even their strength was way down, and they got tired very quickly. So I wasn’t online long, just long enough to say “Hey y’all! I’m home! Be excited!”.
Mom went grocery shopping and picked up a bunch of stuff, and we quickly settled into a routine that involved me sleeping a lot on the couch, Mom cooking wonderfully delicious meals that tempted even my nonexistent appetite, and both her and Kyle continuing to read to me. Mom also bought me some nasty probiotics to help restore the good bacteria that had all been killed off by the antibiotics. (She actually attributes my increased appetite to this, but I’m not so sure.) All I know is that it was dreadful. It came in little bottles and was similar, in consistency, to runny yogurt. The smell was awful—like milk that had been left on the counter for a week or two. And it had chunks in it. Now, they sold fruit-flavored versions, but Mom knows I hate fruit, so she got the plain kind. And it was foul. I could only take one or two teeny swallows before I started gagging. The bottles were small, though, and I survived. Fortunately, Mom had a brainwave and added strawberry syrup to it the next day, which helped loads (she added lots). (I could now get half of it down before I gagged.) I still dreaded that stuff every day, though. At least I only had to take it for a week.
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