Part 2: Hospital Stay, Days Three and Four...

I wish I could perfectly piece together the timeline of events of my hospital stay, but days of the same things, over and over eventually just blur some of the details together.  I believe it was on Thursday (the day after I had been told I was fine to go home), I began to develop high blood pressure.  Not off-the-chart high at that point, but significantly higher blood pressure than I'd ever experienced before. 

At this point, I was also still being visited daily by various doctors from the oncology department and infectious diseases.  Sometimes the doctors would change, sometimes it would be a PA.  Technicians were in and out of my room numerous times a day to draw blood.  I remember being told repeatedly that the staph infection wasn't due to anything I had done.  On one hand, I was relieved to hear that, but on the other hand I very much wished it was something I could control, because I would do whatever I could to make sure I didn't end up in the hospital with another infection.  Without coming right out and saying it, I believe they were basically telling me staph was very likely present when the port and catheter was installed.  I had my suspicions from medical articles I'd read online by this point.  My oncology surgeon told me I was the first patient she'd ever had that developed a port infection.  The other oncologists and support staff told me it definitely happens. I appreciated the honesty. I don't doubt I was my surgeon's first infection case, but it didn't help to hear that.  One only has to do a little reading online to understand it's not exactly a rare occurrence.  I wasn't interested in casting blame.  I just never wanted to experience this scenario again if I could help it.

I'd like to note that on Thursday the hospitalist stopped in again, and I took the opportunity to let him know how disappointing it had been that he had spoken to me so confidently of my leaving, and then never got back to me.  To his credit, he apologized. He was kind and humble, and I took some solace in that, but I felt he needed to know the way he handled that situation had been quite a blow to me, and in my estimation there was no good reason for it to have happened.  At the very least, I deserved to hear from him (even if through a nurse) that I would not be able to leave that day.

I remember on Thursday, there was continued talk by doctors who dropped in that the staph infection seemed to have cleared, but they wanted to run more tests to be sure before releasing me. I know one night I developed shivers and shakes again, along with a fever, so it's evidently not as clear cut as one blood test to prove staph is out of one's system.   It also seemed to me that it was on Wednesday that I began to notice that one-by-one, I was being unhooked from different infused fluids and medicines, and injectable antibiotics began to be administered.  I enjoyed the freedom of not having to be unhooked from things just to move around.

On Thursday I noticed the stand still holding bags of fluids and medicines was on the other side of the room.  It was also on Thursday that talk of sending me home with an IV and a plan to have 24-hour unfused antibiotic via medicine balls was agreed to.  It was that or give myself injections of antibiotics every 8 hours.  While I was familiar with the continual infusion of medicine via these balls from after my breast cancer surgery, I also knew I kind of hated them.  But when it came down to it, I hated more the idea of giving myself (or even worse, my husband giving me) injections three times a day.   So the balls won out.  

On my way to getting a mid-line IV put in...

Early on Friday I had a mid-line IV put in (in order to receive the antibiotic from the medicine ball system), and I could see I was finally truly ready to leave.  There was nothing more that needed doing.  I was feeling pretty good for the most part. I was just waiting...

While weary of the whole affair, I maintained a good attitude for a long while, 

trying to find ways to humor myself...

The problem, I was told on Thursday, was finding a home health care company which they could coordinate my discharge from the hospital with a visit from a nurse to set me up with the infusion therapy balls.  I'm not even sure I should be writing this here, but I was told that while, medically, there was no reason to keep me in the hospital, they couldn't release me until they had the home health care situation set up.  It sounded crazy to me.  But I hung onto hope that that solution was just hours away.  

I held onto that thought all day Thursday, and into Friday.   On Friday afternoon I was finally told that a home health care nurse could not come to my home until the following Monday.  That meant that I would be spending the weekend in the hospital.

After days of so much hope and anticipation of leaving, that was a devastating blow.   After a moment of shock, I began to negotiate the terms of my staying in the hospital for essentially three more days (the rest of Friday - through whatever time I left on Monday).   Could I wear my normal clothing?  Yes.   Could I leave the floor I was on?  Yes, with someone accompanying me.  Could I go outside as long as I stayed on the hospital campus?   Yes.   I knew this last one was a stretch, but I had to ask...  Could I actually leave the hospital campus, if I wasn't gone for very long?   Uh... no.  I couldn't be considered as inpatient and leave the hospital on my own at the same time.  That made sense - even if the situation as a whole made none to me.  I decided to be glad for the freedom to wear normal clothing and made some plans to have visitors the next day.

I will also note that my blood pressure continued to be an issue, and as the week progressed my body began hanging onto fluids.  A situation I've never before encountered, but I intuited that since I felt well otherwise, the best thing was for me to move as much as possible, and I was thankful I could at least take walks.  I did everything I could to busy myself - cleaning/straightening my room, making the bed, cleaning the bathroom...  Any little thing I could do to move from Thursday through Friday, I did.  

While spending all this time in the hospital (after being told I was well enough to go home) was not exactly pleasant, I did try to make the best of the situation.  All the staff were very kind, and most encounters were fairly cheerful - even when different people would come to take blood draws, or take x-rays.  Evidently, with fluid filling my body, they wanted to make sure my lungs were clear and organs were functioning normally.  Nevermind that being home and going about my normal life would have surely prevented all of this extra fluid and high blood pressure.  No one seemed to know quite why it was happening.  As if the stress of the situation wasn't reason enough?

Now might be a good time to mention that Greg had come down with a terrible cold early in the week, and except for possibly returning on Tuesday, he had not been at the hospital all week - both because he felt very sick, and with my low immunity I certainly didn't need to be exposed to his germs.  In spite of the stress of staying in a hospital while being told I was well enough go to home...  In spite of a miserably uncomfortable bed to sleep in...  In spite of everything, up to this point I actually considered these extra few days away from his cold were perhaps not completely a bad thing.  Really, most of the time that I was stuck at the hospital I kept a pretty decent attitude.  Admirable, in fact.  

All that said, even with the constant in and out of doctors, nurses and technicians, in spite of the kindness of everyone, and even being thankful for a room with a great view where I could watch all the comings and goings of pretty much anyone entering or leaving the hospital.  In spite of it all, it was a very lonely week and I looked forward to seeing Greg on Saturday morning when he brought me some clothes to get me through three more days.

The large RV above ended up scraping the lamp post the man in red was trying to warn the driver away from.

After some help from a few people, the RV got straightened out again.

And soon headed out of the parking lot:

only to return a few minutes later! 

~~~~~

Yep.  Lots of activity and coming and going happened while I was just waiting...

Grounds keepers of various sorts

School buses dropped off and picked up school children - presumably for appointments?  Treatments of some sort?  

That was a sobering sight.

And all day long people in red shirts valeted people's cars back and forth.  They all looked like retirees, and based on the energy they seemed to have, I concluded they must enjoy the job:

And when I was really lucky I got treated to some beautiful sunsets:

To be continued...