February 8, 2025
Day 9
Care conference fell flat Thursday afternoon. Key players didn’t make it. The not showing up…could be from difficulty scheduling, communication gaps, something came up. It’s not always somebody’s “fault.” However, the lack of informed decisions/communication DO always affect the patient and family. And there isn’t a lot more in the hospital that makes you feel not so important or understood.
We’ve been struggling to get Tates Lovenox levels in a therapeutic range. She’s been running on the high end. Her white counts continue to be elevated for her and she feels lousy. Pain continues to increase along with higher BP’s. We’ve added iv dilaudid every 3 hours on top of her pump. And constant ice on her lower joints. She’s just not feeling well and everyone is stumped at what her body is trying to convey.
Yesterday afternoon, in working with infectious disease, Tate was switched back to vancomycin as her antibiotic to see if this makes a difference . This is the one that comes with Redmans for Tate and lots of benadryl pretty much around the clock. Fair trade to feel better.
This clotting disorder issue I really wanted to downplay as not such a big deal. But it is. Tate is doing well giving herself the shots. But it isnt easy on an emotional level. They hurt. And they leave ugly bruises. I think knowing theres an end would make it easier, but the thought of forever feels daunting. Tate is on complete HRT as she has only one, non functioning ovary. HRT increases your risk of clots. So while one team wants her off all of the HRT, the other is more concerned about bones and heart and muscles and brain. Tate is most concerned about all the things you feel with no natural hormones . Theres a compromise in there somewhere.
It’s difficult to constantly convey to new team members who don’t know Tate the nuances that mean shes sick. Some need to fit patients inside boxes, some are better at listening and learning. Thankfully, among the sea, we have a couple familiar faces and great listeners to understand that Tate creates her own pattern. I appreciate not being alone on an island all the time. It’s exhausting to be on repeat. Our nurses are the absolute best. A great nurse is a patient’s best advocate.