After another horrible night of screaming and crying and no sleep, we actually had a good day today! The doctors came up with a strategy of pain relief to include valium to get her into a good sleep. Unfortunately, even the valium only provided her with around two hours of sleep; nothing else really gave her any relief.
We went on wagon rides for the better part of the day, and we even participated in painting ceramics and playing musical instruments. She had a real bath after her nurse covered her drainage tube area. Alexandra really enjoyed herself today, and I believe it was so helpful to make things more like normal.
Her fluid is still draining (over 1,700 cc’s now), and her x-ray looks pretty much the same. While the effusions are not getting better yet, we feel some relief that she is acting more like her funny, happy self. They are still trying to figure out the rash on her neck and are planning to discuss it again at rounds tomorrow morning. It looks like they will put her on IV fluids again tonight, as she has not been drinking near what they would like her to. However, with our nurse’s help, we were able to get her a fresh banana smoothie tonight much like she has at home, and she drank more of that than she consumed of fluids all day long.
Tomorrow, we plan to try to get her to walk at least a few steps and hope she feels as well as she did today.