Save the Date!

Yes, we have a surgery date. April 20. Which means being in Cincinnati no later than the 19th for a pre-op appointment. And no, this can't be easy.

We need to see Will's cardiologist who also specializes in autonomic dysfunction...Will's deterioration is a bit alarming. Not only are we now infusing him twice per week, but now at night his hands and feet turn red and are hot. Lovely. He asked me what it was...our lovely nemesis... autonomic dysfunction. So we need to see the cardiologist, but the only available appointment is April 12...8 days before surgery. So do we kill a few days in Ohio or do we come home for two days and then leave again?

So, Will and I will leave no later than the eleventh toting with us an IV pole, an IV pump, a CPAP machine, a nebulizer, twelve drugs, a box of IV supplies, a cooler with IV fluids, and a few clothes. The question is, if we Angel Flight up and back, how do we manage all of the equipment needed to keep my son functional? If we drive up and end up staying, then how do we afford this?