I can't believe what you've been through, but at the same time it's all strangely familiar. My own sons were born with a genetic condition we'd never heard of, and I remember their first several months were a maze of hospital rooms, tests, tubes, and awful expereiences. The thing is, they were healthy kids! It was just all the horrible things we had to do to try and stop the seizures-- injections that made them miserable, medicines that turned them into zombies, and even (this February) brain surgery.
Whenever we're back in the hospital/sugergy situation, I try to keep this in mind: "it's not how fast you get there, IT'S THE GETTING THERE that counts." Please keep in mind, if it helps you, that these months will pass in a blur, and that a couple of months, or even a year down the road, life will be back to some kind of normal.
When I look at my sons now, the hospital and health worries rarely even come to mind. They're just happy boys. They'll always have challenges, and medicines, true, but for them life will be open and (for the most part) happy like any other kid's. I can't tell you how wonderful it is to be on this side of all that medical stuff (the side where it's OVER
), and I wish that for you and your family soon. It _will_ happen.
Blessings for you and your family.