Slow Progress

A week ago, we were told that there was a possibility that surgery wasn't an option for our son because of CF. We were told that we may have to look at putting our son on comfort measures instead. The worst 24 hours of my life were between finding out that CF and lung problems meant it was likely we were going to have to let our son go, and finding out that a hospital was accepting him. I am so thankful that this last week has gone very differently than we thought it would.

Saint Louis Children's took Rowan. He had his surgery the day after his arrival. He is doing well in recovery. I still can't shake the absolute "the world has ended" feeling I had last week completely - but I think it takes time to move past that extreme of an emotion.

Today, they took out the chest tubes (tubes that are inserted to drain fluid off of the chest after surgery). These tubes are supposed to be pretty uncomfortable, so I'm glad to see fewer things in my son. They also took him off several medications and are beginning to wean him off the ventilator.

It could still be several days before he is extubated and we can hold him, but I don't mind waiting. Every day we still have him is a gift we didn't think we'd have.

The hardest thing right now is that we can tell that he is in pain sometimes. Watching a baby cry while intubated is heartwrenching. They are keeping him comfortable without keeping him too sleepy to breathe on his own. It's hard not to be able to hold him and tell him it'll all be a bad memory, but I can hold his hand. And he can squeeze it back. Little victories.