March 6, 2025
Day 35
Yesterday and today just feels like more of the same. Lots of increasing pain as we continue to try to wean the iv dilaudid. If it sounds counter intuitive, it kind of is, but there is a purpose. Tates pain hasn’t been well controlled despite constant morphine into her spine with an additional bolus every 4 hours, 2 fentanyl patches that deliver a constant state of pain meds, iv dilaudid every 3 hours, and a muscle relaxer. Her opioid burden is incredibly high. This would be the end for any non opioid using adult. But she has zero side effects.
The amount Tate is on isn’t sustainable, nor can we go home on iv opioids. So we’re weaning that one, and turned up Tates IT basal (constant) rate today. But it’s tough. And it takes 24hours for yhr change to be felt .
This morning surgery had decided they wouldn’t replace Tates central line until she finished her continuous IV antibiotics….next Friday the 14th, bumping surgery to the 17th. But tonight we heard, discussions were effective and she’s now getting her line placed tomorrow. Vas team was back yesterday and today for more/new lines. There aren’t many sites left for new lines, so a central line tomorrow is a big win.
Today was day 1 of IVIG once again. Tate just sat up for a bit with PT. Doesn’t sound like much, but pain made even that short lived. Tate is having to dig deep to muscle through this wean. The hardest part is not knowing what you’re working towards as far as pain when it didn’t feel controlled before the wean.