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.
http://en.wikipedia.org/wiki/Mycobacterium_avium-intracellulare_infection
http://en.wikipedia.org/wiki/Mycobacterium_avium_complex
Once again,
I was beyond frustrated….......
