March 30, 2025
Day 59
3/30/25
We received a little more clarity tonight on why Tates pain was significantly worse last night and an explanation on why I was questioning some withdrawal symptoms today with increased GI issues and nausea.
Tate’s implanted Intrathecal (IT pump) malfunctioned and needed a reset. We received a critical error code around 5 pm and shortly thereafter realized her pump was beeping with the two tone critical warning. It’s intermittent and such a strange thing coming from within Tates body.
It was nice we were already here as the purple team quickly stepped in with supportive iv pain meds and got Dr. Alan on the phone who was on call and came in to reset the pump on the phone with Medtronic. Thank you Dr. Alan!
Medtronic isn’t “open” after 5 pm or on weekends to consumers…only medical providers. But I wouldn’t have been able to reset it anyway. It took the programming iPad and Bluetooth connection device and an anesthesiologist who knew what Tate needed for her settings.
We learned though that it had been periodically rejecting Tates boluses since at least 24 hours ago. Yet it didn’t let us know this until it almost completely stopped the basal rate and did stop all boluses this evening. This is actually not only painful for Tate, the pump just stopping can make her very sick.
This piece of technology is amazing but also a reminder tonight that it’s a machine that could malfunction at any time. It does make me wonder how frequently it’s missing her pain boluses and how much this is contributing to pain fluctuations. It’s a bit concerning/mind boggling to know that theres no external buttons for emergency reset…just bluetooth. I’m hoping we’ll learn more tomorrow about potentially what happened. Medtronic wasn’t able to offer an explanation. Im hopeful that understanding the why can help prevent a repeat.