What a weekend

Today we had to leave our daughter at a hospital that is 2 hours away from home. Yes, I know it's the best hospital and exactly where she needs to be but that just doesn't make it any easier.

The last few days have been a whirl wind.  She's had a few episodes but when we left today she was stable and comfortable. The doctors at CHOP definitely have a different few than the ones at Morristown.  They're looking at a trach as a last resort right now. There are other things they want to try first. I'm not sure how I feel about that. I'd be extremely happy if she ends up not needing a trach but a part of me is scared they're just delaying the inevitable.  But they are the experts and I trust them completely.  Right now it looks like ENT will be able to scope her tomorrow or Wednesday. Once we find out what they see we'll know more of what her course of action will be. Right now we're taking it hour by hour and hoping she has an uneventful night.

Today we're just going to focus on Makenzie and make up for the time we missed with her. At some point we'll be out of this storm and all four of us will be home together.  Until then we'll just have to keep faith that everything will be ok!