January 30, 2024
1 Year +344
Day8
Too tired to post last night. Tate was fine all day yesterday as far as fevers go and started running an elevated temp again last night. We’re not sure exactly what’s causing it, but so far, other than being tachy, there aren’t any new symptoms accompanying it that are causing anyone to jump.
Each day the pain team reduces the pca a bit. Tate is off the oral morphine she came in on and the IT pump is now covering that amount. She is taking dilaudid every 3 hours and was on torradol-now ibuprofen. The surgery pain is definitely improving! I’m guessing she’ll be off the pca either today or tomorrow. The surgery stirs up the chronic pain, so currently the IT pump doesn’t feel like it’s doing enough. But the beauty of the IT is there’s lots of room to increase without systemic side effects.
Yesterday was tough emotionally. We tried hard to all be prepared with our expectations on the IT pump. It IS helping. But Tate feels like she’s in a flare from her lupus which was a big reminder that this pump isn’t fixing anything but is a symptom bandaid. We all know this in our brains. But it hurts our hearts. She just goes through so much. She will still feel sick. She IS still sick. We are so grateful for something to help and we believe with more titration, the IT will help with pain even more. We are praying for a renewed energy to just keep going. Tate has other medical issues popping up again so the cycle of trying to figure out this underlying disease process(es) will just continue.
Something pretty remarkable happened yesterday. I’ll share that In another post.