After another set of labs (her poor arms are so bruised), chest x-ray, and impromptu visit with her heart transplant team it was determined that Ela is in an okay enough spot to still be managed out-patient with close monitoring. Several of her labs are off. But everything viral they were testing for came back negative. There is some consensus that the symptoms Ela has are not all connected. She definitely is fighting something (it’s been almost 2 weeks of this) but some of it could be heart related too. So there just isn’t a clear cut answer. She does seem to be doing better today. Hopefully, we are headed the right direction. We are having to restart formula feeds which really feels like a step back. We haven’t had to do formula feeds for almost a year now since she started eating well by mouth. We pray her appetite returns soon and that this is only a temporary thing. The team made some med adjustments that we hope help through the weekend and then we will check in with them on Monday to discuss plan for possible Daratumumab treatments to start on Wednesday.

Thanks for praying. We will update again early next week.