Hi Pat,
So sorry for all you and your hubby are going through. I, too, don't have experience with this tx, but have been a caregiver and can feel your protective instinct in your words. You go girl I have learned that my instincts were right almost everytime with Kevin. You have to be your husband's advocate here, so if you are really that uncomfortable, let it be known. Be patient with your words, but ask for explanations and expectations. They should understand your questions and concerns since this has gone a little different from the plan!!
Stay tuned in here. Will be praying for things to level out and you to find some peace.
Kathy