18

After 18 days, Elizabeth is scheduled to be released from the hospital tomorrow....hooray!! We have been here so long that I don't remember at which point being in started to feel a bit normal. I am beyond ready to get out of this place and home to Walter, Jackson and Kate.....but a tiny part of me thinks of how I will miss my almost-three weeks with Elizabeth, in this room together twenty four hours a day.
I have that thought and then I think of this chair bed and the isolation and awfulness of the hospital and I snap back to the reality of how even alone time with my girl doesn't make any of those things worth it. : )
Elizabeth actually lost weight over the past day and a half, and her Prealbumin labs aren't as high as the doctors were expecting, but the team recognizes that Elizabeth needs a break, and so they are letting her go. If she needs to be readmitted, well, then we would deal with that later. For now, tomorrow is the plan and everyone is anxious to make it happen, especially since Camp Hollywood is taking place tomorrow night!!!
Camp Hollywood is an overnight camp that a friend of mine has organized for Liz and another eleven year old patient here. Both girls have to miss out on their 5th Grade Camp experience, and this friend had the wonderful idea of putting together a special night for them. The Girl Scout Council has donated their camp and house here in Long Beach, and many other donations have been made as well.....restaurants, people to do hair and make-up, a photo booth....the list goes on. It is such an amazing idea and the night will be special. Liz's doctors know how much she has been through and see her as a whole, including her mental health, and have voiced how important it is for her to have this experience. They are so supportive, in fact, that Liz will not even receive TPN tomorrow night. They have instructed us to just let her have a night off for fun. We can do that!!

Walter spent some time today at home preparing for Liz coming home and the changes her TPN and PICC line will bring. We thought we'd move her into Jackson's room so that she wouldn't be sharing space with Kate; if her pump were to sound then Kate wouldn't be disturbed during the night and Kate wouldn't have to be around the IV pole and supplies, since she is freaked out by it all.. Also, Jackson's room is next to ours, so I could hear her. She is insisting on staying in her room, so we are going to give it a go. Luckily, the girls are fortunate to have a huge room, so Walter moved their beds and the futon around, and now Liz is a little further away from Kate's bed.  We'll give it a try.

Speaking of Walter.....he decided to take TWO weeks off of work. unheard of for him. He has so much vacation time accumulated that he can't get any more until some is used, but it is not easy to take time off, so his days just sit there wasted. He felt strongly that he needs to be home with the family right now, as we've become a bit disjointed. I am in shock that he has done this, but very grateful. God works even in horrible times, and if you know anything about Walter or things we have faced, it is awesome to see how he has grown to put family first....how he has become a man who has his priorities in line this way.

Cannot wait to be home.