It's been 8 days since we were told that there was nothing that could be done for Bea and she is still here. Actually, she is doing a little better than last week. Nothing to get too excited about with regards to a miraculous recovery. But, she is awake most of the day and has had moments where she is being clearly responsive. She even smiled a few times yesterday. Thanks, Lucy!
Bea's vital signs have been consistently good all week and have given the doctor's cause to talk about a return to home for permanent hospice care. We are considering this but do not know what would be covered in terms of staff/nursing support. We have been told that her external shunt can remain as if we take her home but there seems to be confusion about this with different doctors. Chris and I have decided that the procedure to reinsert the shunt is unacceptable because they will not use general anesthesia. The other option provided was to cap the shunt and we decided this is a choice we cannot make as it would escalate her death. It's not a choice we can live with today.
Assuming that we get all or most of what we feel we need for support, that we get a clear and honest answer from our insurer (and know what we're getting into instead of getting billed after the fact which is their usual course) and that Bea holds steady for the next 3-4 days we will take her home. It's her favorite place to be and I know that living at the hospital day in and day out is wearing on her, too. We're all well taken care of but... just like in the Wizard of Oz... there's no place like home.