Struggling to Keep her Crown

So sorry for the late update. I typed one couple of hours ago and when I went to post,POOF!, it was gone. The blogger server was down and has just become available again. So I will try to remember all that I said.

The main discussion during rounds centered on Ash's fluid status. Looking at her today I thought for sure they had filled her tank. Her face is puffy and round and she looks too full to me, but her labs still showed that she is too dry. Her BUN was a 17 and this is not the number we had hoped to see this morning. Although I am very concerned about putting so much fluid in her so quickly the team decided to increase her feeds and her TPN to 30. I am frightened that they will go too far the other direction now and that we are going to start struggling to breathe again. This is such a dangerous balancing act! We had hoped that most of Ashley's agitation was coming from the dehydration, but today we see that it is primarily withdrawal from the narcotics. She is miserable. My heart is broken for her as she struggles with the most extreme withdrawal I ever seen her go through. She is literally ripping handfuls of her hair out. She is almost entirely bald on the left side. I tried to explain to the surgeon that she was going to lose all of her hair and become bald if we didn't figure something out soon. His reply, "Bald isn't too bad. My boss is bald and he looks pretty good." I replied,"Your boss isn't meant to be a princess, and Ash is struggling to keep her crown on without any hair!" He laughed and warned me not to tell his boss he was not a princess. I'm not afraid of his boss and I would gladly take our plight to him.

All in all her kidneys are working but they are not happy. The surgeon told me that happy kidneys come before beauty and although I agree with him I am struggling to see her go through all of these extreme changes. I am worried about how these massive fluid fluctuations will affect her body. I know it can't be good on her.

As long as she is sleeping she is ok. As soon as she wakes the whimpering and the hair pulling begin. Our only hope for her to keep that crown on is to place a large bow under it to hold it up on her bald head. I will adjust to her new look. It's just been a very tough week. I am trying to keep her room as quiet, as dark, and as peaceful as you possibly can in all the hustle and bustle of a PICU. I pray that she will begin to feel better and better in the coming days.

Thank you for praying for her kidneys. It looks as though we might have dodged the dialysis machine. I appreciate each and every prayer you have sent on her behalf. It means so very much to know that you care.

P.S.
Thanks Krista for the fabulous bow and p.j.s. The monogramming is so Ashley.