Babygirl has tried just about everything out there that there is to try for migraine. The few things that haven't been tried are the things she can't tolerate, things that don't mix with her transplant meds, and things that are bad for her kidney.
We are left with Botox.
At one point she had nerve blocks in the back of her head to stop the headaches. They worked (for 24 hours, and then we were admitted to the hospital for a few days). The memory of the sedative, the injections and the hospital stay are all balled up together for her, and until recently, she's been reluctant to try anything else that involves shooting needles into her head.
But at the beginning of December, she took a look at how miserable her life had become again (what IS it with late fall anyway?) and I called Neurology to tell them we were finally willing to give the Botox a try. I called early on a Friday morning. (My phone has an alarm set that goes off every day at 8:30 AM to remind me that the phones are open at Neurology. If I call later, they don't get back to me for a couple of extra days because I 'called so late in the day.' It actually went off during a neurology visit once and I explained what it was for to the doctor. He was surprised, and told me I didn't need to do that. Um, no. Anyway....) I was told: 1) It takes a couple of weeks to get insurance to authorize Botox, so they may or may not be able to have it available for her upcoming December 17 appointment. 2) The doctor had the day off but would be back Monday and they would address that with him then. 3) She needed to have failed at least three medications and have headaches at least every other day to qualify, so we went over all of that and she certainly qualified, so there should be no problem.
Ordinarily, knowing this department as I do, I would have made a follow up phone call to nag them about it. But, life....
Mom fell and broke her hip. Whether she would survive this was uncertain. Plans had to be made for what to do next, and I had to go on day-to-day mode. She stabilized enough for me to risk heading for Philly for our appointments.
"What call?" Says neuro. W. T. F.
I recite back what I had been told, and it was agreed that it was a lot of detail for a call that apparently never happened. But, hey, water under the bridge, right? They are going to start Right Away and put in an Expedited Request for the Botox. And hey, it might not have gotten here for this appointment anyway, These Things Take Time.
I'm thinking to myself that these people couldn't find their gonads with both hands on a warm day.
The next two weeks are crazed. Christmas. New Years'. Mom is fading, but slowly, and we need to find a nursing home and get in a application for Medicaid. I need to take her house apart as if she's dead even though she not. My brothers come in and are blessedly helpful in sorting through family photos and artifacts. Curlygirl steps up big time to help unload furniture and cart clothing and other small things to the church for the rummage sale.
Early January I call our insurance. On the January 4th (three weeks after our visit?) Neurology had reached out to them to see if they needed authorization to physically do the Botox injections: They do not. But I couldn't see that they had actually asked for the Botox itself. Our specialty pharmacy hadn't received an order.
The next day I put a call in to Neurology and asked if there was some way I could help. Later that day I got a happy call from their coordinator letting me know that they had FINALLY identified our specialty pharmacy and now they could actually get that order placed!
There are times when momentary speechlessness saves us from committing felonies.
"Why didn't you ask ME what the specialty pharmacy was? We get Babygirl's transplant medications from there. Their number is in my phone!"
Would you like a magnifying glass to find those f****** gonads?
Six days later they had the Botox. Six. Days. Later. If they had had the right information, paid attention to the phone call.....they would have had the Botox on December 8th, latest.
The copayment on the Botox is $300. If they had gotten it LAST year, it would have been FREE because we had already met our deductible.
Once they got the Botox, they had to look for the 'next available appointment' for the injections. We leave tonight, for tomorrow. Two and a half months. It makes my chest hurt with rage to even think about it. These folks work at the finest children's hospital in the USA, dedicated to easing the suffering of kids and my kid has had pain nearly every day with an ER visit for headache thrown in for good measure because of this.
Maybe they need a microscope.