January 25, 2024
1 year +338
Day 2
Last night and today felt rather long. We’re happy to have the first 24 hours behind us. Tate did alright last night with lots of extra meds. Tate is allergic to one of the IV antibiotics she’s getting which requires lots of Benadryl. As a bonus, it’s been a great sleep aid to help fill in the gaps the pain meds aren’t covering. Tate has the PCA button in her hand and can get an iv bolus of morphine every 10 minutes. Even when she’s sleeping I can hear her clicking it, often with no response as it’s too early. Tate amazes me with her ability to handle mass amounts of pain. She doesn’t want to be touched or moved, but also has navigated this world so long, she deals with most of it quietly, independently and in her own way. It’s often hard for those who don’t know her to read her cues. We’ve been blessed with some of the same nurses we had in December and great new ones too. Chronic pain exacerbated by acute pain becomes the perfect storm. I won’t say Tates pain is covered, but she’s getting enough medication that her thoughts sometimes cross dream and reality. This bothers her as she realizes what she’s talking about isn’t real and often is nonsensical. It’ll get better as we can wean some of the medication. We’ve been here so many times but it’s not easy nor funny to see her this way.
Tate has had to have her body flat and head in line with her shoulders and hips. Tomorrow she’ll try sitting up a bit to see how she tolerates it all. She started lovenox shots tonight to prevent blood clots.
We’ve been able to wean Tates daily, oral morphine by 25% as we increase the IT (internal) pump constant rate. We need to reach 50/50 with that and she needs to be completely off the pca to go home. So it’s two separate goals and we’ve got a bit to go yet. could go quickly or slowly…but historically, weaning pain meds has been a process for Tate. The transferring from oral to the IT pump will go much more quickly.
Thank you for all the love and prayers. We are so touched by the continued support.