Anne age, 14, is currently in hospital. Her pulmonary edema got out of hand, and she was rushed to the hospital on Monday.

We have the pulmonary edema under control now, but her seizures are uncontrollable. She is currently on her third day of long term video EEG monitoring. The neuro came in this morning and told me she is having almost constant myoclonic activity. We also learned more about her GI stuff. It has been decided that she has intestinal neuronal dysplasia. From the somewhat vague explanation the GI gave me, it presents like Hirschprungs, but ganglion cells are present. It is progressive in most cases to the point of total GI failure, which is where Anne now is.

There is no hope of regaining intestinal function so we are left with three rather pitiful options. TPN dependance for the rest of her life (which will be very short given TPN complications), total stomach, small bowel and colon transplant (which we have decided to pursue), and the third option is waiting for the intestinal pacemaker to be approved (which we have decided against).