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Thursday, April 3, 2014

I was beyond frustrated.......

If you're "just tuning in" this post may leave you wondering what the heck I am rambling about, I hope you take the time to go back and review my earlier posts so you can catch up with our true (and sometimes unbelievable story. I very much appreciate your thoughts and comments.

I was beyond frustrated.......

I was in tears by the time I finished talking to the coordinator at the Skilled Nursing Facility.  It was obvious that the only thing she was interested in “coordinating” was the use of as many days of placement as Medicare and moms’ secondary insurance would pay for.  What didn't she understand about our intentions of going home as soon as possible after mom saw the surgeon?  The coordinator knew from day one that our plan was to return home on August 23, 2014, so why would she think it was OK to change appointments to the 29th?  This wasn't the first time…..or even the second time we had had this conversation.  I was beyond frustrated; I was mad.

“That is NOT OK” I had nearly shouted at the coordinator; I wanted the appointments changed back immediately.  We went through the whole song and dance again about their transporter having a “conflict” and if I wanted the original appointments I would have to pay for whatever arrangements they were able to make with an outside contractor to transport mom to the appointments.  “I DON’T CARE WHAT YOU HAVE TO DO, BUT WE ARE LEAVING HERE ON THE 23rd”, this time I did shout.  The brilliant smile was replaced with uncertainty as the coordinator stepped around me, into her office and said, “I’ll see what I can do”, as she picked up her phone.  I didn't know if she was going to change the appointments back or call the police as I stormed back towards moms’ room.

I stopped by the bathroom, splashed some water on my face and tried to calm down before I talked to mom; I wasn't sure what I was going to tell her.  I stepped out of the restroom just in time to see the coordinator step in to the elevator; I was sure she hadn't had time to change the appointments and if she had called the police she would certainly wait around to see me hauled off to jail.  I refrained from running down the hall and yanking her out of the elevator by her shiny black hair and turned down the corridor leading to moms’ room.

Mom had been returned to her room from the therapy department and was sitting in her wheelchair waiting for someone to come help her to the bathroom and in to bed; she had pushed the call light, but the staff didn't seem as responsive today as they had the previous day on this wing.  I helped mom to the bathroom and got her in to her bed before telling her I needed to go back to the room to make some phone calls while she rested.  “I’ll be back this evening” I promised as I kissed her on the forehead.

I passed by the coordinators office on my way out; she had not returned.  I was pretty certain the only way I was going to get the appointments straightened out was to do it myself, which meant I was most likely also going to have to figure out transportation myself too.  During the short drive back to my hotel I had come up with only two possibilities: I could either hire the transporter independent of the SNF; or, I could rent a handicap accessible van and take her myself.  Of course, neither of those options would even matter if I wasn't able to get the appointments changed back to their original times; that thought nearly made my knees buckle as I walked across the parking lot heading for my room.

Since I knew the number to the orthopedic surgeon who was taking care of moms’ knee, I dialed the number before I even got inside the building and then realized that in order to keep my connection I was going to have to walk up three flights of stairs as I would surely lose the call if I stepped in to the elevator.  By the time I got to the landing on the second floor I was connected to the surgeons office.  “I actually held your first appointment time and was going to call you.  Shall I change it back?” the scheduler told me she had been concerned when they called to change the appointment because we had just gone through this a few days ago and she knew we were planning on heading home after the seeing the surgeon; at least someone had listened!

I was partially relieved after that phone call, but I still had to try to get one more appointment changed back and I still had to figure out how I was going to get mom there.  For that matter, I had to figure out how I was going to get her home.  Great, just what I needed was something else to worry about!

When I got to my room, I quickly turned on my laptop and connected to the online account for mom at the University so I could look up the number for the spine surgeon and the infectious disease doctors.  My mind was so preoccupied thinking about how I was going to transport mom, I nearly missed seeing there was a “new test result” tab lit up.  I had finished rescheduling all the appointments and was just getting ready to exit the program when I saw the notice and scrolled through to see what was “new”.  What was new made my head spin.

I had thought mom was in the clear as far as any new growth from the cultures they had taken from her knee in mid July, but obviously that was not the case.  There is was staring me right in the face.  Yet another mysterious infection that I would no doubt now spend many hours researching; another infection that left undetected and/or untreated could systematically kill my mother; another infection that had not been discovered until it was almost too late; another infection, that in my opinion, should have been at least suspected by her primary care doctor and/or her rheumatologist that had been treating her for years; another infection that most likely was a result of the many years of suppressing her over active immune system; another infection that I could barely pronounce, let alone understand; another infection that would inevitably hinder moms’ recovery.

Once again, I was beyond frustrated….......