God protect her

Day 45 & 46:

Tuesday’s news brought Wednesday to a halt. The entire tone with Tates team and nursing staff shifted. Plans changed as we worked to process what comes next. Today however, was busy! So many visits from various teams and Dr’s. An added fentanyl patch to try to add a bit more relief, yet pain continues to be an issue. This type of pain is called “refractory.” This is pain that cannot be controlled despite aggressive treatment nor can the source of pain be removed. This type of pain is exhausting, relentless and debilitating. And leaves me feeling helpless.

We met with BMT PT and we met Tates BMT team today. Next Wednesday we meet with them again to go over transplant details. We’ve been warned by the team themselves that this is the difficult one. A 3 hr meeting where they tell you all the ways this life saving treatment can end your child’s life.

As I finish this tonight, hours after I started, Tate is headed to X-ray due to another pain crisis. Always worried about perforation, they need to rule that out before we can try something new for pain. God protect her and relieve her pain.