June 21, 2024
June 21
Day two of infusions. We’re every 3 weeks now for IVIG, so the infusions come quickly. We really feel like the combination of more frequent IVIG and doubling one of Tate’s immunosuppressants has slowed down the brain effects of her disease. Time will tell, but we’re feeling a little hope in this area from a treatment standpoint. We are hoping the UDN will help with the physiological understanding portion.
Tate and I were commenting that after so much time spent in the hospital, these 8 hour infusion days really don’t seem so long anymore.
Last “months” infusions Tate was inpatient, so our sweet nurse, Carolyn, decorated Tate’s door with a “Welcome Back. We Missed You.” Those little things are big things and the familiar faces, hugs and smiles make all the difference in our days.
Lots of labs back in the red this week, but that’s never a surprise and seems more normal than not. We never do anything about them, as they are Tate’s norm, but they become part of the trending pattern. Tate’s white count and ANC are back in the toilet, which is actually reassuring that the bacteria in her blood hasn’t popped back up (a risk per infectious ID because we left her line in.) but always a pause as it means she’s susceptible to everything else. We are headed to WI on Monday for a week, so our goal is just status quo.
Due to appointments, we sadly missed Pringles Birthday Pawty for the first time this past Friday. Last year Tate gave him a carrot. This year…a corn. Happy 5th Birthday Pringle!