Out of sedation safely

Amelia just came out of sedation about an hour ago. She did very well during her tests, with the exception of some low heart rates (which, to my recollection, are normal for her). Her MRI was read immediately by our wonderful neurologist, who reports that her brain is healing! Not "healed", but at least healing! That means we can finally let out a long sigh of relief and stop worrying about underlying genetic conditions would show up as worsening demyelination. I could have danced a jig when he said that! As a nurse, I've seen the trajectory for children with those conditions, and it is seriously my very worst nightmare. I am so relieved that isn't the path God has asked us to walk.

Her spinal tap showed that the pressure around her brain is "acceptable". I wasn't given the actual reading, so I don't know how high it is. They feel the fluid they drained off should have the desired therapeutic result of relieving the headaches Amy has had for the past week or so. It is hard to say yet, as she has a bad headache from the spinal tap itself. We should get some preliminary lab results this evening: the white blood cell count in the spinal fluid, the protein, glucose, and myelin protein in the fluid. The cultures will take days to come back, and some of the more obscure disease tests will take 1-2 weeks as they have to be sent to a regional lab at a different site.

Thank you for your prayers. We emerge, once again, relatively unscathed. We are praying now for discharge tomorrow, a quiet weekend at home instead of the adventurous winter camping trip we had planned for my birthday. In light of the events of the week, we will feel blessed and content to be under the same roof with all of our children safe and sound.

Uncle Nick gets a smile from a cranky Amelia last evening.