September 23, 2013

Anna is doing pretty good today. She made it all day yesterday without having to be "tapped" (the word for draining excess fluid from the area above her brain), but around 4:00am they came in and did the procedure, though it was only a small tap so that was encouraging.

The Chief Neurosurgeon came in this morning and said that Anna will be having surgery tomorrow morning. They will place a shunt in her head that will help her body drain this excess fluid from her skull on it's own, and at a rate that matches with her own growth and development.

They still can't say with 100% certainty what Anna's condition is. They are still running lots of tests, gathering information, and even reading medical journals and research studies to try and figure it out. One of the neurosurgeons was in her room yesterday for almost 2 hours just looking at her, asking us questions, and watching her vitals. He called her a medical mystery in the sense that she doesn't fit into a set category with a common diagnosis.

The theory they are working on now is that she has an extremely rare case of benign macrocephaly. In almost all cases, this condition means nothing for a child other than that they may have a larger head with excess spinal fluid that they just grow into as they age.

In Anna's case, this excess spinal fluid that is between her brain and her skull does not drain on it's own, and never will. This excess fluid causes pressure to build in her head and caused the strokes, her vomiting, tiny hemorrhages behind her eyes, and all of the other really bad and scary things that have been happening to her these last 4 weeks.

So even though they cannot 100% confirm this diagnosis (at least not today), her treatment would be the same regardless. The shunt is necessary, which means surgery is necessary. No surgery is without its risks, but in her case the benefits far outweigh the risks, which is why the surgery will happen sooner rather than later. Without it, it is likely Anna wouldn't be able to leave the hospital and would need to be continuously monitored, and right now all we want is to be able to go home with her.

We are waiting for the neurosurgery folks to come back in and explain the procedure in greater detail, but frankly, all I care about is that she is in the hands of experts, and these experts tell us that she is going to be fine.

Still, we are sitting here in sort of a daze, realizing that tomorrow our 4 month old daughter is having brain surgery. BRAIN SURGERY. And that thought is scary as hell.