8.17.24

In my last post I had a few pieces of exciting news. True to Aimee style, she has kept us on our toes. Once we were able to get the standing bi-monthly prescription for IV ceftazadime, we noticed that the effectiveness seemed to have decreased. She just wasn’t getting back to her respiratory baseline. So we brought in a new trach aspirate sample. About 10 days into her 14 day course the pulmonologist switched her to a brand new (to Aimee) antibiotic called meropenum. Also by IV for 14 days, but a new delivery method and a broader, stronger antibiotic. We just finished it last night and moved her straight into her 4 week course of an inhaled antibiotic. And most importantly, she has gotten back to that elusive baseline. Here is the interesting delivery method for the meropenum. Even our hospice nurse had never seen one of these pressurized infusion balls. Pretty neat! It takes about an hour 3 times a day, which did make for some tricky scheduling with her TPN needs though.  

Now, about the vitamin B. We are seeing less of the original results unfortunately. She is still showing improvements in her vision and her ostomy, but her energy has been generally quite low. We are continuing to add those 16 vials each day for now. 

She continues to have weekly visits with the hospice team. They do all of her blood work, help us to navigate managing symptoms, and overall do much to help us be at home, happy, and healthy-ish. This picture is of her nutrition labs done through the central line. She has monthly draws done to make sure that her TPN is calculated correctly and watch for other trends. 

The kids and I are taking a month off from school. The younger 4 and I have been getting out of the house by taking once a week adventures while Ed takes care of Aimee. It does our hearts good to adventure together!