If you're just seeing this, I encourage you to start with Part I. Also, here's a link to a short video I made while in house.
Toward the end of the second night with my angelic nurse, I finally got a few hours of GOOD sleep. I can't tell you how amazing this was! My nurse and I had made an earnest attempt to line up all my bedtime medications to preempt pain, nausea and fever, but it was the ear plugs and sleeping mask she dug up for me - plus a good dose of sleeping medicine - that really did the trick.
The next morning I was temporarily elated by my few hours of good sleep. My fever was low-grade. While some of my symptoms were being better controlled with meds, I had a couple of new issues: The bruise from the insertion of my Hickman Catheter and that whole general area hurt, and shook every time I coughed; Also, the IV antibiotics were "working their magic" on my bowels. Having killed all my good intestinal bacteria, everything was liquidized. I can't tell you how much fun that is when you are forced to capture all of your urine into a "pee hat" - which covers up a huge portion of the front of the toilet - when you go to the restroom. On top of that, I had started my period. It was a hot mess.
After a few hours of energy, I spent the rest of the day feeling hot and grumpy. I did manage a walk when Todd came to visit, and I did a bunch of stretches and light core exercises in an attempt to help my back. I tried not sitting in bed as much. Overall, I was feeling pretty bad but stable.
As bedtime drew nearer, I tried coordinating all my night time meds with my nurse as I'd done the night before. I was armed with my sleeping mask and ear plugs (unfortunately, I found that most people who come into your room when you're sleeping like this still just start talking to you as if you were sitting there awake, only slower and more articulated: "Miss Smiiiith, I'm here to draw your blood.") There is no peace in the hospital.
Anyway, I kind of tanked that night. My bedtime meds never seemed to get ahead of my fever or my pain. I was waking up every couple of hours from fever hotness, pain, and having to go to the bathroom. I also had a lot of interruptions - from the nurse (he did his best), the nurse assistant (blood sugars at 3am every night!) and, in the morning, the EKG technician and phlebotomist.
This turned out to be a good indication of what was to come that morning. Having gotten wind of my rough night, and concerned about the worsening fevers, the doctors ordered a barrage of tests. In addition to my morning labs and EKG, I had the pleasure of getting more blood cultures drawn, and urine and sputum were requested. They also ordered a CT scan.
The Scary Day
The doctors came to my room early on that morning. This was the day that things got scary for me. First of all, an xray I had had done the day before sadly showed no improvement in the pneumonia. Though no worsening either. Furthermore, they were concerned about some thickening of my plural lining and thought that it might be fluid that would need to be drained with a chest tube. Lastly, they thought they might be able to see some damage to my lung tissue. (Yikes, yikes, and more yikes!!) A more detailed CT scan of my lungs was ordered to answer these questions.
The doctor was also worried about my worsening fevers from the night before, which could be part of the process of the pneumonia clearing up or could be a sign that infection not being treated adequately. "You have a very good pneumonia," he said, which took me aback as I ran through the many definitions of "good." He emphasized that this infection would be a slow one to get over, that I might be recovering for up to a month.
Fortunately, the antibiotic cultures from my bronch had also come back, and it was determined to switch me onto another IV antibiotic which would better target the type of staph I had growing.
With my new lab tests cooking and the new antibiotic in me, I spent the day nervously optimistic about what might happen next. I got in for the CT scan early and Todd and I killed time all afternoon waiting for the results. I finally decided to read up on chest tubes, which is something I know very little about in this situation. I did know that the experience was supposed to be a pretty unpleasant one.
Later that afternoon, the resident doctor came in to tell us the results of the CT scan. The fluid in my plural lining was not enough to drain. Also, the location was bad for getting a chest tube in (right behind my shoulder blade.) (Yay!) The areas the doctor had seen that might be damaged lung tissue in fact were not (Super yay!!) She again emphasized the long, slow recovery ahead, but commended my efforts at activity thus far (I had run into her on a Starbucks run the day before.) "You have a good pneumonia," she said. "It would set anyone back."
I know Todd and I both slept better that night with our worst fears subsided. And I also felt good about going forward with the switch to the new antibiotic.
I had no fevers overnight, and none the next morning. I still felt a bit weak from the past days, like I needed a lot of rest. But I was better than I had been. When the doctors came around, they asked me if I felt ready to go home. I had mixed feelings, but they seemed to think I was on the right track and could leave. I decided to trust their judgment. So, home I went!
It has been a slow recovery, but nothing I'm not accustomed to from years of cystic fibrosis exacerbations. It does suck though, being back to that place, that sick place. So sick you are useless some days and need a lot of help (thanks, friends!!)
I will be on IV antibiotics for a total of four weeks. I return to the doctor about a week later for a recheck. The docs want to do another broncoscopy to ensure that the infection I had hasn't caused an episode of rejection, which often happens. Wish me luck with that. In the mean time, I'll be doing nothing.