Update: February 26, 2017
Ana has been more lucid and mobile since my last update. Jim gets all the credit for this.. After the awful scare we had on Tuesday when she barely woke up, he was determined to change the way we were administering her pain meds. I was terrified that reducing her meds would leave her vulnerable to more breakthrough pain. Seeing her sobbing with pain and being unable to help her…well, that’s my worst nightmare. But…my fear is not a good reason to over medicate her. It is my job – and Jim’s – to figure out the balance of comfort and lucidity that works.
We ended up reducing her oxycontin to 10 mg doses (we’d given her 20 mg the day she was unresponsive and slept all day). But we added a dose so she’s getting it every 8 hours instead of every 12 hours. It’s a slow-release form of oxy. This breaks down to 1.25 mg of oxycodone per hour over 24 hours and we’ve been giving her fast-release oxycodone for any breakthrough pain or discomfort. We also cut the Ativan back from 1 mg to .5 mg (we’d increased it to 1 mg the same day we doubled her oxycontin…)
This did the trick. Not only was she more comfortable throughout the day, but she’s had longer stretches of lucidity and has been eating more since Wednesday. She’s still sleeping a lot, but she also has these incredible moments of being present with us – like today when she and Emily were playing around with makeup (in the dark – we’ve had no power since about 6 p.m. yesterday.)
There’s no doubt that she’s getting worse. Today she asked for the oxy/Ativan combo twice as well as Zofran for nausea and Zantac for extremely severe heartburn. She also has a rash on her back and chest and we’ll be reaching out to her hospice nurse tomorrow to get it looked at. I sent an email to her doctors and also called hospice tonight, but it’s nearly impossible to diagnose a rash without looking at it. Dr. Waldman thinks it could be zoster – chicken pox – even though she was vaccinated. This poor kid…
Each day…each moment…is a gift. Yeah, it’s hard. She’s angry and sad and justifiably perplexed at why this is happening to her. I’m learning how to listen – to REALLY listen when she talks to me instead of trying to control the situation with suggestions or meaningless platitudes. She sees right through all that crap. She’s so smart.
Thank you for the postcards, texts, Facebook messages and emails. I feel the village all around me – and that means everything right now.