DAY 60

I have the other children settled with family and friends and Monty and I are here until our time runs out. Faith looks so beautiful and peaceful. We have asked that they cut back some of her sedation so we can have more time with her awake. They are willing to do that and we will watch to make sure she is not uncomfortable. Obviously her comfort is our top priority so hopefully we can find a happy medium.

It is so frustrating to walk in her and see her looking well, only needed daily dialysis instead of continuous, not having blood pressure medication and having vent settings that are so close to being weaned......and yet it is almost the end? It is all stuff we just can't visibly see and makes it that much harder.

If nothing happens over the next week...meaning she doesn't declare that she is done by having another massive bleed or a major drop in her blood pressure or respitory status....they have said they will scope the stomach again and see if there is improvement. It is hard for the doctors because her stomach dying like that doesn't make any sense because it didn't look like that when they did the ERCP. Since the ERCP there hasn't been any major setbacks to cause it. They don't know why this has happened.

IF the stomach looks better...I still don't know what that will mean for Faith. If it does not look better, we are going to have to start thinking of stopping some support because we don't want the tissue to start disinegrating and cause a massive bleed, essentially bleeding out. It is ugly.

So, for now, we are in a holding pattern for the week unless she declares herself beforehand. All I know, is that I don't want her to suffer. All I know is that I want her to pass peacefully with mom and dad by her side. All I know is that I will love her FOREVER.