So, we're not heading to Cincinnati this Sunday. I received a call this afternoon from Beth, the nurse, who said that the orthopedic who was scrubbing in with Dr. Crone was going out of town on an emergency, so the surgery had to be rescheduled. Not that we have a date at this point, but she hopes to call early in the week with one.
Part of me is grateful for a few extra days (or weeks?) to get things in order here. The other part of me is screaming inside. Don't they realize that Will is not stable? His systolic blood pressure (the top number) has not been over 100 in two weeks. And the diastolic is constantly in the 40's. He's taking his meds. He's receiving his infusions, but it's not holding him.
So do we go to two infusions a week? How do we manage this knowing we still have months to go to get to the big surgery?
I do realize that they are doing their best in Cincinnati and that Will isn't their only patient...but could we please get this show on the road? Literally?