Today we went to the hospital.
Pook's first appointment was with pain management. They were late. After half an hour of waiting in a packed waiting area that was more like a pen, we let them know we were moving on to another part of the hospital for her next appointment.
We got to the second appointment on time and went in immediately. We were seen by a nurse practitioner, medical student and surgeon. They all had many questions, listened intently, and came up with their own conclusions. Our surgeon still does not believe that the shunt is the problem however, our insistence that something needs to be done now has lead him to take the next step. He is booking her in for another 24 hours of ICP monitoring followed by exploratory surgery. He says it is possible that she is no longer shunt dependent, that her shunt is blocked or that it is overdraining. I am asking that a new valve be used.
Now we must wait for the dates for all of this to happen. It isn't so easy to get the OR two days in a row. It will probably be another two weeks before we have any action. At least we are moving forward. None of us can stand to hear one more doctor say it is migraine or ask about stress. She has been unable to recover since her last surgery - that should mean something.
She was pleased with the results and is waiting for surgery and hoping she will feel better. She is showing no fear. She is miserable though. Really not well tonight after a long day, not enough sleep, and too much time upright.
I can not say how much I hope we find the answers.