February 10, 2024
Day 17
A pretty crummy start to our day was rescued by Tates pain Dr. It’s such a relief to have a Dr. walk in who knows your child, understands her situation and makes decisions to move forward rather than reasons why they can’t. He brought in a remote that syncs with Tates implanted pump. She can now give herself six 75 mg morphine boluses a day in addition to the basal (constant ) rate. Tate is still on the pca and also getting oral narcotics around the clock. It’s nuts how much pain medication she is getting and even more crazy that her body is eating up every last bit. Not an ounce of goofy in her, not even a nap today. And today is the most comfortable I’ve seen her in a long while. Tomorrow the PCA goes off and our Hope is we’ll be in a decent place for discharge on Sunday. We’re feeling a bit of hope again that we’ll get somewhere better with this IT pump.
Another favorite nurse today and tonight! A visit from Ruffles & Tori, PT, mini resin cookies applied to the nurses badges and today felt a little less heavy, had a few less tears and a few more smiles. Thank you for all the love and prayers.