Sunday, September 14, 2014

Back to Hell.....

I took off work the first day of school.  There is always paperwork. She needs to have medication dropped off at the nurse's.  And this is a new school, so the nurse doesn't know her.  I know better by this time than to show up at the nurse's office on the first day right when the doors open (let the moms of the diabetic kids have that delightful moment.  They need to be there.  Babygirl isn't going to have a crisis in the first ten minutes).  I let the chaos settle and came in around 10:30 to introduce myself. 

The nurse at the high school is a very nice lady.  She fired off emails to all of Babygirl's teachers to let them know they need to pay attention to her IEP and send her down if she has a headache.  She fired a note to the gym/PE teachers regarding her restrictions and her frequent absences.  It was a productive use of time.  Then I moved on to the guidance office.

The guidance office was a mob scene.  Apparently this is where you go when your schedule is not what you hoped for.  There were at least 15 students waiting, three ahead of me for Babygirl's counselor.  Then I had a thought:  "My daughter has an IEP - perhaps I need to speak to the special education team?"  Bingo.  I was sent to a different office ("Just go upstairs and through the breezeway." Ummmm, really?  Well, I found it eventually LOL).  I spent some time with the lovely folks up there going over what was in her plan, the general unpredictability of her disability, and the need for us to be aggressive about keeping her up on things this year since every single class matters for credit. 

The next day I got a call from her assigned (OhDearLord they have a word for it - last year it was 'consultant teacher' but this year it's something else) ADVISOR (that's it!) and discussed it all again with her. Babygirl's schedule is jam-packed, with absolutely no study halls or room for assistance if she needs it, and she has THREE electives, two of which she didn't select and doesn't like. 

The first week went well enough. Babygirl attended Wednesday (first day) through Tuesday, coming home headachy but functioning.  This past Wednesday she awoke with a can't-lift-my-head-from-the-pillow horror that hadn't abated despite pain medications by Friday morning.

I called the school and left a message for her advisor, asking what the plan would be.  According to her IEP, she should have a home tutor at this point for nearly 3 hours already. 

A few hours later she called and said, "I noticed Babygirl's been missing."  Apparently she didn't get my message - it's a general line at the special education office  Previous teachers have used cell phones.  She said she'd collect homework and drop it off at home.  Um, okay, I guess.  She left it on the porch.  We clearly need to work on this.  I guess being proactive about things only gets you so far.

I also called neurology.  A severe headache for this length of time is not her norm. The person taking the message asks me for a list of what she is taking for headache.  "Tramadol."  "Oh, okay!" "Hold on! That's not all!  Tylenol. Lisinopril.  Keppra."  "All for the headache!??" "Yes."  I got a call back, and the nurse outlined a plan:  She'd talk to the doctor, but they'd likely call in some steroids to break the headache, a triptan to treat the headaches in the future (common treatment that hasn't been done for Babygirl so far) and an increased supply of one of the prevention medication so we could continue ramping that up.  I called Hubby to alert him to go to the pharmacy.  Keep in mind that I fit all of this in while I was working - in the middle of a computer crash, no less.

At ten of six, I called Hubby to see if he had picked up the meds.  He'd gone, but there WERE NO MEDS.  I called the on-call doctor, drove home, sobbed on Hubby's shoulder, called AGAIN 45 minutes later (they had our area code wrong!) and got a call back in five minutes.  She checked the computer. 

Neurology couldn't prescribe a triptan without consulting with nephrology (no surprise.  And no real problem for today - it's not going to work on a three-day-old headache anyway. Trust me. I know).  There's no mention of the ramp-up supplies, and I forget to even ask.  The steroids?  You know, the stuff that will actually STOP the damned headache?? Not mentioned either. 

This nice young doctor is not the person who screwed this up.  I know this.  But I want to lunge through the phone and take her by the throat.  My kid is suffering, and dammit!  I am suffering with her.  They should have CALLED me.  They should have said, hey, screw you, you're on your own with this - or SOMETHING.  I want to tell her this. Loudly, and with multiple obscenities.  I refrain. 

We discuss options.  She agrees to phone in the steroids.  Our affordable pharmacy has long closed, so we select a more expensive alternative.

While we are waiting for the medication to be filled, Babygirl comes downstairs for dinner.  She can't eat, and she sees the pile of homework that her teacher dropped off and suddenly it's just all too much.  We left the table together and I held her in my arms and we both cried and cried. And then cried some more.



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