THIS is Purple Day at our house...

>> Friday, March 26, 2010

We built up to Purple Day, excited, prepared, optimistic and energetic. TODAY was going to be a GREAT day.

In shades of great it was.

But mostly,

It sucked.

It started off innocently enough by me taking Bug to school. I brought the staff up to par on why Bug and I were wearing purple and on my way out I heard...

Something has come up.

It happens a lot. THIS something was pretty darn serious to Glenn and I. While Bug was out sick, the little boy that attacked him earlier, the one that bit him and gave him the opportunity for his first stitches, was now ON HIS BUS.

I was stunned. His family has moved and he rides Bug's bus. They took his glasses off and they are both in seat belts/harnesses but..WTH? I agreed that it was the LAST thing that the drivers and staff (let alone the parents of BOTH children) need to worry about and I got the number for transportation at Alpine School District. I called in the car. Left a message and waited, trying to calm down.

Dot called back a little while later and told me they were working on it. I stressed the importance by detailing his need for stitches. I believe it was the first she had heard of it because she said OH DEAR a few times. He will be on a different bus next week. Until then, I am dropping him off, and picking him up.

Incident one = solved.

Tay went to school, we had lunch, picked up Tay and went home.

At 3:15 I got ready to leave to pick up Bug. As I was trying to clear the Check Engine Light in my car, my cell phone rang. It was Bug's teacher. She NEVER calls. I knew he had a seizure.

Sure enough, 2 minute Tonic by all accounts. I got there and he was sitting on the floor playing with a Doodle Pro. His Anisocoria was VERY apparent. I held him on the floor for a while, he wasn't smiling but he was cuddling with me. I talked to him and listened to them describe what had happened. They all had the same sad look on their faces. I felt bad for them. I am used to it, it sucks but it doesn't rip my heart out most times. This was a first for them and the first time always sucks. After about 20 minutes, and some hat play with Sofia..purple hat was VERY fun for her...I took him to the car. He was still not smiling.

In the car I called PCMC. I asked for an appointment with the Head of The Department. I got: You need a new referral. Wait...what? I let them know that I thought it was ridiculous that I needed to go BACK to his Primary Care Physician to get a referral to a department that I already HAD a referral to. She told me that they needed the DOCTOR to identify WHY I was requesting a new Doctor.

Because parents don't exist in their world.

I told her that the original referral didn't specify a Doctor at all and I was given Dr. V. She argued a tad by saying: You saw Dr. B first. Yeah, when HE WAS 3! I wanted her again, I didn't ask for Dr. V, I asked for Dr. B and didn't get her so how is THAT my fault? I am NOT happy with no PET and MEG testing and that Dr. V thinks we are done with testing and he needs a VNS. So, I said, since the referral does NOT state a Doc..I want to see the Head. She said: That's not how it works at Primary Children's. My response:

Oh really? Because I wasn't happy with a Doc at Moran, which is a PART of Primary Children's and they got me to the Head of THAT department without another referral. They made me VERY happy. It must be NEUROLOGY that doesn't work that way.

I was told, after a lot more back and forth about WHY I WILL NOT BE GETTING A DIFFERENT REFERRAL, that the Head would probably just refer me back to Dr. V. I said, and I quote:

"If the Head of the Department sends me back to the source of my frustration, I will NOT be going back to PCMC at all".

Then I heard: I will send him a message and have him call you.

He did NOT call back. Probably good for him, but not good for Bug.

Incident two = In progress

All night his Anisocoria is very present. It reminds me how I have failed helping him. He is happy now, and smiling and was cuddling and chirping at me. It was wonderful. I gave him his medications and I prayed he has good ending to his first Purple Day.

My Purple Day needs work.

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