Tomorrow is our second visit with neurology, not counting the covering physician during Babygirl's admission last month. The amitriptyline dose is up to 50 mg and is not working. Six weeks of total dietary compliance did not change anything. No additional plans have been made or suggested, although I'm assuming that tomorrow's discussion will cover that.
My issue is that I am STILL flaming mad about the fact that her doctor did not follow up on the studies he ordered while we were in the hospital. The miscommunication still burns. If Babygirl were getting any better I'd probably be less hostile, and less anxious.
I've not been sleeping well again, and I'm sure my current level of exhaustion is not helping at all. Today's Bible verse in Sunday school was from Isaiah : "When thou passest through the water I'll be with thee; through the waters, they shall not overflow thee. When thou walkest through the fire, thou shalt not be burned; neither shall the flames kindle upon thee." (Sorry for the King James take - I don't have a Bible with me and that's how I learned it as a kid.)
It made me cry. If ever there was a time in my life I have felt as if I were in the midst of flames and floods, this would be it. And I am drowning. Or burning. Or both. And I feel like I could easily come off as the psychowitch mother from Hell if I am not careful.
I need to make Babygirl's needs clear: She NEEDS to get back to school, and SOON. She needs a break from the pain, and she needs hope.
I need to make my needs clear: Talk to me. Give me a lifeline, and some guidelines about when to use it. Right now I feel like they don't want to hear from me except at appointments. The transplant team has never made me feel like that.
And I need to get across to the transplant team: I think the Rapamune has something to do with the headaches. I understand we don't have a lot of alternative, and that keeping the kidney alive is a huge priority; but if they can't find a way to actually make her life better we are failing all the same.
Above all I want to not end up screaming or crying. And if I MUST cry, I need to do it with the transplant folks - they (I hope) do not see me as a psychopath.