Sunday night late we got approval for the Soliris. Found out is FDA approved but classed as an experimental drug which is the reasoning for all the extra approval steps. The drug is very new and untested on anyone like Melody but is our best chance at this point. She continued to be sedated and had a pretty good night, even seeing improvement dropping the percent of oxygen supplied from 85% to 55 throughout the night. This morning it was attempted to remove the sedation, after about an hour she hadn’t regained consciousness but started having problems with chocking on the venation tube so it was decided to continue to leave her and reassess tomorrow. She did receive 3 doses of the Soliris midmorning and had no reactions. The decision to delay was to have more of her primary medical team present with outweighed the need to start 8 hours earlier. Saturday her sister and brother in law came to visit and Sunday my brother and wife visited, all from Minnesota. Sara has been helping and with us the entire week. Her transplant doctor is back in the country after helping with her ill mom. Even during her family crisis, she has been very active in helping form Melody’s new treatment plan. She visited this morning, gave me a hug. The family visits and the friends we have made at the U have helped distract me from all the trauma I have seen her going thru the past couple days. Best case, We are hoping to see improvements in both respiration as well as signs the drug is starting to cure her in the next few days.
Posted on: Tue, 30 Sep 2014 04:20:39 +0000
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