I've been short on gentle, mild thoughts lately. Work has been crazy with the retirement of a colleague. Mom's decline is never pleasant to watch. Hubby's back pain is no picnic. But it is Babygirl's headaches that really take it out of us.
Her recent hospital stay resulted in a 100% resolution of her headaches for about five days. Then a day on, a day off, a day on, a day off. New medicine working well, then working slowly, then working not at all, until finally she settled back into the chronic daily headache, awakening with a 7/10 pain that would gradually decline to a 3 - 5/10 by the end of the day, but never completely go away, except for one lovely evening for a couple of hours.
I started calling neurology on the morning of day three of this headache, last Friday. The nurse called back at lunchtime, said she'd talk to the doc and call back by the end of the day.
Monday morning I called again, and requested again that they please return a call, because day three was now day six. A coordinator of some sort returned the call and was miffed that I was angry (really? Well, I did say, "I feel like no one gives a rat's ass about my kid." Cussing at the person who is not at fault is bad form, and I apologized immediately and had to listen to the "you aren't the only one with a kid with headaches" lecture, the immediate Karmic payback for my rudeness), but she promised that she would immediately go to the nurse and that someone would call me by the end of the day.
Tuesday evening I came home from work and sobbed like a child all over Hubby. He's gotten quite good at just hanging on and making comforting noises.
Wednesday morning I called again (I have an alarm set for 8:30 AM on my phone so I remember to call early in the day. It is pathetic but that way no one on the other end can say I called too late in the day for them to get back to me. Not that the time of the call apparently matters in any way). We are now on day eight of a nearly continuous headache and I've waited over 5 days for a call back from a doctor. Keeping in mind that the poor soul on the other end of the line is not responsible for this, I outline the problem AGAIN. And I know she can hear that I am crying. I'm not going to pretend that I'm not. At 4:40 PM I am with one of my nurses, notice the time, and start crying again because I know neurology goes home at 4:30, so there is no hope of a call, but I still have paperwork and patients of my own who need to hear from me, so I pull myself together and keep working.
At 5:30, my phone rings. It's the doctor. I was stunned, sincerely stunned. I explained, AGAIN, where we are in the process. It is truly a good thing that there is 200 miles and a phone between us, because his basic excuse is that he needs clearance from the kidney docs before he can try anything new. I ask what he want to try and he rattles off a list that contains one medication that they have already okay'd, one that she already on, and one that they have already declined. I point this out to him and he refuses to give her the one they say is okay because HE doesn't like the side effects.
"Doc, let me tell you something important that you need to know: My brother took one of those silly online how-long-am-I-going-to-live quizzes and it gave him 46 years. He said, 'Why would I want 46 more years? Give 'em to Babygirl!' Babygirl said, 'Why would I want them? My life sucks!' "
There was a pause. "Do you want me to readmit her to try to stop the headache again?" "Yes. Tell me when you want us there."
I skipped Bible study and choir rehearsal to finish every phone call and piece of paperwork that could be finished. And this morning we are here at my sister-in-law's house, waiting for a call from Bed-and-Board to tell us when a room is available.
Stopping the headache is only one step. They HAVE to find something to keep it from coming back. So I'd be very thankful if all of you would send your thoughts and prayers our way.
DeeDee
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