November 18, 2025
We made it back to the hospital for Tate’s pain pump refill yesterday (Monday.) The meds get mixed in Florida and shipped to the hospital. We ran into a delay Monday so were thrilled when it arrived just a bit late.
The plan was to increase bolus time to every 90 minutes. Unfortunately, her pump only allows for 13 boluses a day, which is every 110 minutes to be the shortest between boluses. It ends up being a long 45 minutes every couple hours with no pain meds. It takes a bit for the med to travel through the catheter into Tates spine.
So, we tried increasing the dose a bit hoping it would last longer. Tate does deal with some side effects from one of the meds in her pump. If it gets too high, it can cause leg weakness among other things. So…we’re a little stuck. The increase isn’t doing enough.
Over the weekend, CVL’s youth group tied fleece blankets for Children’s Hospital Colorado. A photo op was missed, but I did snap one when we dropped off the 15 blankets. These are our favorite to receive during a long admission. They brighten the room and provide some extra cozy. Thanks CVL YG!
Today we send off blood to the NIh. It’ll be a while before we coordinate next steps, but always hoping for something better! Thanks for all the encouragement . We’re always grateful for our Tribe!