We are currently working on weaning her off Ativan (formerly Midaz), but it is definitely causing some withdrawal. Olivia has not been feeling as good as we hoped.
Her belly is still enormous, which has us concerned. The medical team isn’t as worried, but it seems like it is making Olivia uncomfortable.
Max and Becky have begun to learn about how to clean the trach site and replace the trach ties.
The team tried to wean her respiratory settings, but they had to go back up again. We hope that once she has recovered from the medical weaning, she will be more relaxed.
Some more family has been able to hold Olivia, and one nurse was amazing and let six of us into her room at one time for a quick photo. We are typically only allowed two people in the room at a time, one of which has to be a parent, so this was pretty wonderful. We aren’t sure when Olivia will next get to see so many people who love her at the same time.
The biggest update is that it was expressed to Becky and Max that Olivia won’t be coming home this summer. The estimate was “at least another four months”. This was incredibly hard to hear, realizing that we are halfway through her stay at best.
