Yesterday Ella & I spent the whole day at Children’s Hospital and in the end Ella was admitted for an immediate shunt revision. We started first thing in the morning with a routine CT scan. Ok. That went smoothly– she lay still without moving and needed no sedation. We waited more than two hours until our appointment with Dr. Black. He didn’t seem concerned at first but thought it strange that her left ventricle had not decreased in size. (Surprising that he was concerned b/c from looking back in this log I see that I wrote that last time he explained to me: “some people just have large ventricles…”. At that time (last November) the shunt was turned down completely although the tap showed intercranial pressure of 60. Yesterday he sent us to see what the setting of the valve was (via x-ray). For some strange reason, they don’t believe in looking these things up in the chart which never made it to Dr. Black’s office. Dr. Black saw from the x-ray that the setting was completely down and ordered a tap. Tish, the RN, tried sticking the valve twice to get a flow for measurement. A miniscule drop or two made it’s way down the tube and she immediately declared: SHUNT MALFUNCTION. This was reported to Dr. Black who got back to us with two recommended options, admittance to hospital yesterday or today. Since there was a chance that they would have OR yesterday afternoon we opted to stay. Of course, there wasn’t in the end and Ella may be having the surgery right now. Etan’s with her and he didn’t answer his phone. Anyhow, Ella through all of this has been a real trouper. She’s acted fine yesterday the whole day although she did get bored and hungry. She also fell asleep as Tish was preparing the lumbar kit for the tap. Once she got stuck, of course, she woke up with a howl.
I’m certainly not happy about them having to open up the shunt thing, especially since these are prone to so many problems, but I’m glad that there may be some explanation for her slow development. Once everything is functioning properly, and the doctors seem confident that we will get there in due time, we hope her remaining brain will have the best conditions for development.