Fontan Day 6....I think.

I forgot how the days seem to blend together when you are here at Children's. It seems like we have been here for a month at least and it has been less than a week. Yesterday Lilly seemed to be "Done". She wanted to go home and be out of here so bad. She is starting to get mad at the world.

We have had to go up and down on the O2 from .5 L to 2L currently we are sitting around 1L and have been hovering around the upper 80's for her oxygen stats.

Lilly actually gained weight a little from yesterday, she was at 10.3kg (22.7lbs)and we are at 10.4kg  (22.9lbs)today, surprising as she really hasn't eaten much.

She has learned, because she is too smart, that the people that come in in the blue long coats (lab coats) are not fun and can not be trusted. She can be such a drama queen and often screams at them when they walk in. It actually is kind of funny.

She is still struggling to move around too much and mostly begs to be held. It breaks my heart that I need to tell her "no" so much this trip here. "No, you can't have peanut butter toast", "No, I can't carry you all the time", I find myself laughing to keep away the tears sometimes.

I do feel very blessed to be here at CHW, I know that both her and I are in the best hands possible and they are doing everything in their power to get us home quickly and safely. Besides, I know which strings to pull to get the result that I want and my voice and opinion heard.