Last night was another rough night with little to no sleep for either one of us. Alexandra couldn’t seem to get comfortable, and it seemed that there were endless visits from nurses or other hospital staff all night long. Of course, the beeping at the end of a round of IV meds throughout the night doesn’t help either!
Today, we were able to get her up and about more. She mostly sat up in the wagon, although she did sit a couple of times in a chair to color and do sticker books. She has also wanted us to read to her, which is something she has not cared about since coming to the hospital.
We had one difficult period where it was obvious that her tummy hurt her (she even told us so), but we believe we now have a game plan in place to rectify that situation. She is still draining a lot of fluid from her left side (over 1,350 cc’s now), and her right side still has the effusions, which have not gotten better but have not gotten worse either. Hopefully, if we can keep her tummy feeling better, we can get her walking again, which will help even more with the fluid.
She developed some sort of a rash on the front of her neck, which they started treating late yesterday. Unfortunately, that has now spread down close to her incision and around her neck more. The doctors are watching it closely and changing to another treatment tonight.
While we are totally exhausted at this point, we find strength through others who provide such wonderful encouragement through our CarePages site and by seeing more and more of our sweet child and less of the terrible pain she has been experiencing.
I look forward to tomorrow when we, hopefully, have the tummy pain under control and can work with the physical therapy and child life specialists to get her doing more of her normal activities.