Well… Just as we were thinking Ella is on her way to recovery, along came last night. Ella seemed to be troubled by something, and we couldn’t figure out what it was. She would cry hysterically and not calm down regardless of what position we put her in, held her or lay her down. The only thing that had a calming effect was if we put on a video for her. Suddenly all is fine. She was getting her normal pain killer (Tylenol) and we weren’t sure whether this was pain, discomfort or some anxiety. This lasted the whole night. Ella was up throughout, refusing to lay down (as if the pain intensified) and not giving in to sleep. It is particularly troubling to have Ella cry like this because it is so different from her usual calm self (besides, they way she looks now combined with the crying would bring a rock to tears). It is totally heart wrenching. We tried the more powerful pain medication with no results. Her all out crying sometimes sounds like a general wail for all the misfortune that has targeted her. Maybe I’m injecting that meaning. To add to the celebration, this new medication comes in the form of syrup not a suppository that we have to conceal in juice and then plead with Ella to drink (which she only sometimes agrees to). Later on today I am taking her to her pediatrician to see if there is anything else that could be going on, an ear infection, constipation, who knows. Of course we are worried this could have to do with the shunt (that would be incredibly bad timing) but we don’t think that is the case. She is alert, and has an appetite, not too typical for hydrocephalus. Dr. Bauer, in a phone conversation said this might be the nerves coming to their senses (so to speak) after being knocked out during surgery.
Typically right after surgery, patients don’t feel too much pain. You would want the nerve revival to coincide with the healing. But I guess it doesn’t always work that way… In any case, I am amazed that Ella is functioning at all. At this point she hasn’t slept in more than 24 hours. Not a wink. (We are close to that too).