JULY 3 – Breathing tube had been removed and sedation was over, but there was little change in Brandi’s consciousness.
JULY 4 – Brandi was at least somewhat conscious. She appeared to recognize family members. She was able to shake her head successfully to very basic yes/no questions. She was able to pucker for kisses from Travis. After family left, the nurse asked her if she knew where she was, and Brandi whispered “hospital.” The nurse also indicated that Brandi asked for “Travis.”
JULY 5 – Brandi was awake and eyes could track, but was noticeably less conscious. Not able to focus and I really don't even know if she knew who I was. Very minimal replies to commands and no speech.
JULY 14 - As I understand it - unless something changes, treatment is waiting on 2 tests. One is another lumbar puncture to look at antibodies again. And the other one is a blood test to rule out Tuberculosis (bacteria) encephalitis. Once those tests are complete (my hope is by Wednesday), they will begin treatment (my hope is by Thursday). If it is not TB, then they will treat her with anti-viral encephalitis medication along with steriods for swelling and a form of dialysis (to remove auto immune antibodies).
I am getting anxious to start treatment. If they properly diagnose it, we could see significant improvement in a few days, and nearly normal mental activity in approximately 10 days (give or take a few). It would be reasonable to think that she coudl be released from hospital in 14-21 days after treatment begins, with some minor rehab and follow up visits.
JULY 20 - It appears that the steroid treatment was not effective. The doctors have also backed off of the assumption that she has a viral infection. Instead, they are now thinking that her condition is an autoimmune disorder. So either today or tomorrow Brandi will begin plasmapheresis (blood cleansing).
JULY 23 - Apparently the length of Brandi's stay in the hospital is taking its toll on her body. Among other complications, she has at least one (maybe two) blood clots in her lungs. So right now they are concentrating on getting her body healthy again before they go forward with treatment for her autoimmune encephalopathy. And they now think that she is too frail to receive plasmapheresis. So they are going to try IVIg treatment as soon as she is stabilized. IVIg has a similar success rate as plasmapheresis for patients like Brandi, so it's not like we are settling for a lesser treatment. We just have to try to stay positive and hope that they can begin the treatment soon and that it has a positive effect.
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