Tuesday noon update

i met with rob & ang today for awhile and here is what i learned. He hasn't gotten worse, but not much better yet either.

Charlie had received all 3 doses of Prevnar (at 2,4,6mo), the vaccine, and the MDs are not sure why his body didn't recogize the organism to fight it. There is like a 1% chance he has some immunosuppressant issue.

They are going to stop the norephinephrine because his blood pressure is remaining steady. He was on it for 13 hours and anything less than 24 hours is preferred. They also stopped the vancomycin because they learned that his strain is responsive to the Rifamphin. He is getting an NJ feeding tube today. His liver enzymes were low, but they have come up. THey were concerned about his kidneys, but they are doing better and he is wetting diapers "like a race horse" Rob says.

He has not had anymore seizures since yesterday. They are still waiting for the Neurologist to come read the eeg, and we'll update on that when we can. He is on phenobarbital and a little fentanyl. Yesterday his right pupil was nonreactive and left was slightly reactive. He has some cross reaction on the left and none on the right, which is right in line with the right hemisphere swelling in his brain.

Angel said she is maybe not feeling optimistic, but realistic and hopeful. miracles do happen. but he more than likely has some damage. I guess the first 36 hours after diagnosis are the most critical, and we have passed that point, which is good. we will take any improvement however slight. We will keep updating any changes - however little and are so grateful that he hasn't declined. I know how many people are praying and fasting for this little man and it is incredible. please keep it up. rob & angel send their love and gratitude. They will be getting their laptop tonight and will try to post on the blog.