Today was one of the harder days so far, even though Maggie is doing just fine. It’s a long list of small things that have left me exhausted tonight – she has meds due at 7am and meds that end at 10pm, so essentially I can sleep a maximum of about 9 hours, except she wakes up several times a night which leaves me behind. And she now naps during her infusion appointments after she gets Benadryl before platelets, so I can’t sleep then (unless I let someone else take her, which I will not yet do). Plus giving her 4 IV infusions a day, plus drawing all her labs, plus coaxing her to take all of her oral meds, plus a 5 hour clinic/infusion visit, plus trying to get her to keep her mask on, etc, etc etc is hard! So this is me letting you know that life is harder for Tommy and I after discharge, and we appreciate your continued support. I’ve been asked a lot in the last 24 hours when I’m (physically) going back to work and Maggie is still a long way from a kid that I feel comfortable leaving with someone other than a nurse or her parents for very long. Photo today: I tried to give her a real bath tonight, which was great, until I had to take off the tape that was keeping her line dry, which made her cry for longer than bathtime. But here’s a pre-tape removal picture.
I hope Baba’s visits help but maybe not. Once you get into a routine at Ronald McDonald apartment, it will get better. Baba is available in between meds and clinic during playtime, whenever! I see where it is a tough, sort of unpredictable, schedule! It will get better and hope you find some new tape!
That a LOT of tape to have to remove!! Hang in there, Tracy. Clinic visits will get (a little) shorter as time goes on!