I know that I have been sporadic at best about posting here. There is a reason for that. We've had a rough summer to say the least. The start of school has not been any better.
Here's a glimpse into what I/we have been dealing with for the last few weeks.
Yesterday morning I got on the phone with the intent of talking to someone in
charge at XYZ Insurance about the sudden change in Princess's treatment plan. That sure as heck did not happen. Instead I was told
to call this number and that number. No one wanted to take
responsibility or even knew who I was supposed to talk to about
discharging Princess too early from the Purple Spot Intensive Center or (PSIC).
Finally I got the number of the ABC Department. This is the team that sends out the Purple Response Team
when Princess has a really bad flare up. They are the ones who also have the lovely in home
crisis team that we found to be a complete waste of our time.
The gentleman who I talked to could barely speak English but somehow I
was able to understand him. He told me that there was an Imelda (Not her real name) who worked
there who indeed may have written a letter about Princess's care to the PSIC .
He asked me if I wanted to talk to her but by that time I was so ticked,
it would not have been pretty. This gentleman, who we'll refer to as TD
from now on, told me that it was the doctor who made the decision
to discharge Princess. I told him that it was my understanding that Imelda had
written a letter that at the very least influenced the team at the PSIC to discharge Princess. He told me that that was incorrect. He stated again that
the doctor made the decision. Round and round we went. About the only good
thing that came out of that conversation was that TD told me that we
have every right to use our own medical team. We should not be made to
feel that we have to use theirs. I told him that if this is the case,
then he needs to let his employees know this and to stop bullying us.
Later when we went to go pick up Princess at PSIC, I was recounting this story
to one of the nurses. Who should happen to be sitting there but the PSIC's doctor!!! He confirmed what I already believed; that they were told
that XYZ Insurance would not pay for more care for Princess at their facility. There is a letter that was emailed or faxed to PSIC but
I do not have it yet. Princess's case manager at PSIC was on another line
and could not talk to me. I will be trying to pursue this
Monday. I am beyond irked. I was flat out lied to by XYZ Insurance staff not
once but multiple times Friday morning as I tried to get answers.
In the midst of the flurry of my phone calls today, Princess's case manger
through the school district called. She set up a meeting for Princess to meet
the director of her new school on Monday and start on Tuesday. She told me that
if Princess has problems accessing the curriculum at this school, that the IEP
team can call an emergency meeting to look at other options. Regardless,
there will be a 30 day IEP meeting at Ocean Coastal Academy (Not its real name) to see how Princess is doing
When we went to pick up Princess, I was discouraged because Princess was still in her night
gown and it was 12 p.m. I told her that she needed to put on clothes
before we left. That only took 45 minutes.( Insert smirk here). Then as we are exiting, Princess reaches under her tank top and pulls out her undergarment. My husband just took it and put it in one of the bags without missing a beat.
All of the way home Princes was talking non stop and I thought we'd have a
repeat of last time. (We had to return Princess to PSIC in just over 24 hours because the Purple Spots were still there.) Thankfully we made it home without incident. It was
funny because about 15 minutes before we arrived home Princess blurts out "Are we there
yet? My bum is getting sore." I about busted a gut trying to stifle my
When we got home, I let Princess rent a movie on iTunes so that my husband could run
a quick errand and I could take a breather. We had no major episodes/ incidents tonight. Princess did a
few impulsive things and was a little non compliant but we did not see any Purple Spots creeping in.
We have found that since we never no when the Purple Spots will appear or when Princess will become impulsive, one of us has to be in the same room as she is just about all of the time. Makes for one tired mommy and daddy.
So hopefully the rest of the weekend will go well.
That's it in a nutshell. When things settle down a bit, I hope to be able to post/ write more often but for now I am just happy to have a little reprieve from our roller coaster life.