An uneventful day for Ella. Typically for her situation (we are told) she is having fever spikes, a few hours with fever, then it goes back down. She cycles through awake and sleep periods, sometimes more aware than others. When she is very awake she is able to open her right eye a bit, otherwise it remains closed. She tracks and she is interested in what is happening (to an extent). We were feeding her breast milk using a syringe because she does not seem to be able to suck yet. The feeding specialists came in today and said we had better stop that, Ella might be taking some of it to her lungs. They said that after such an operation it usually takes some time for kids to go back to sucking and swallowing.
They want to run a test on Monday that will show where the liquids are going when she seems to swallow them. They have an imaging device that can show it. What I don’t like is that till then she won’t be getting any food food. She is getting calories and nutrition into her vein, but it’s been over a week already since she ate anything. The doctors are also starting to talk about discharging her next week. I think it is a bit premature for that, right now it isn’t even possible to pick her up. She is in pain when you lift her head or turn her over and cries out. It seems like we’ve been there forever, but really it has been only a week. The place is so enveloping and the experience so overwhelming that it makes it seem like there is nothing else. Is there?