Today was a routine PICC change day for Evelyn, but we decided to reintroduce sedation for her dressing changes because of the anxiety and some of the pain that comes with them. They used a small dose of ketamine, and they were able to get everything done in about 10 minutes. Before this, her changes could take close to an hour, with Evelyn needing multiple breaks in between.
The nice thing about ketamine is that it can help with both pain and the memory of the experience. For Evelyn, we’re hoping this can take away some of the fear and anxiety surrounding these weekly changes. This will probably be our practice going forward so she doesn’t have to carry all of those feelings with her every week.
Since getting her Berlin, we’ve also experienced more alarms from her machine at night. Sometimes they seem almost nonstop. Between perfusion, ICU, and the transplant team, everyone has been trying to collaborate on ways to lessen them, looking at everything from fluid status to pump settings and other adjustments. Unfortunately, nothing has truly kept the alarms away.
There is a newer machine called the Berlin Heart EXCOR Active, but it isn’t FDA approved yet and is currently only being used in trials at select hospitals in the United States. Mayo wasn’t part of the trial because, at the time, there weren’t any patients at Mayo on Berlin Hearts.
Tomorrow, Mayo’s team will be having a call with the company to see if there is a possibility of transitioning Evelyn to the newer system through an exemption. We’re cautiously hopeful because there are some pretty significant differences. The new model allows for a longer amount of time away from being plugged into an energy source, is smaller and quieter, and gives children more freedom to move around. It’s ultimately intended to replace the older version that Evelyn is currently using.
So, we’ll see what tomorrow brings. 
For today, though, we spent our afternoon in the fort Mom and Evelyn built, complete with a campfire and snacks. Sometimes it’s the little pockets of normal childhood that make these hospital days feel a little less like hospital days. 
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