Update

The 5 day steroid treatment for ADEM went without a hitch. (1 gram of methylprednisolone per day) Emma was well sedated, had no fever, and hardly moved a muscle for the 5 days. The surgeon is very pleased with her progress and her stomach and small intestine function improved so that by yesterday she was being feed entirely via nasal tube to the stomach. Yesterday they began reducing the sedatives and soon she began to wake. Like the last times she had plenty of energy and it was difficult to keep her calm and still in bed and to not have her trying to pull tubes and equipment. The waking was slightly different because of the tracheostomy tube which allowed some sedatives to still be used - the neurologist wanted the waking to be very slow. The latest EEG's show no sign of seizure activity and Emma has become more and more awake over the last 2 days. Unfortunately the steroids strongly suppress the immune system and last night she had fever again. There are a few possible infection sources and broad spectrum antibiotics have been started while they wait for the lab to identify specific cultures. So far the signs regarding the ADEM are very positive, she can follow commands, move all limbs and see well and she has improved each day as the sedatives have been reduced. She has no trouble remembering her situation, her friends and family and even some events from the last waking. The trac tube means she can not talk so communication is reduced to facial expressions and hand squeezing. One of the possible infections is in her bronchial tubes so breathing is still difficult but she is controlling the ventilator herself and producing about 60% of the energy for each breath.

Thank you all so much for your great support.