Here's Charlie snoozing in her car seat OFF oxygen! She's doing better now than she was before she came down with that last pneumonia, honestly. I think she just keeps growing pseudomonas. They always treat that along with the pneumonia. I'm going to ask them about doing a low dose of maintenance tobra. Because I HATE putting this child on oxygen!
Ok so more great news. We waited until after she got better to try the scopolomine patches. I didn't want any funky side effects WHILE she was sick, ya know? Well, she's doing *wonderfully* on them! We're cutting the patches in half so she's not even needing a whole dose. We change them every 72 hours and other than some mild skin irritation and a dry tongue (which we've started swabbing), she's had no side effects. Her secretions are SO much better! She's definitely needing suctioned less, and less is coming out when we do. She's breathing easier. I never noticed how hard she worked to breathe before....it was always just her "norm". But she's breathing calmer now AND her heartrate dropped about 20 bpm across the board. That happened after her first ablation...but I didn't expect it to happen again. She stays around 100 regularly and maybe 110-120 when she's excited. 60-85 when sleeping. She was 109 the other day while she was being jiggled by her Vest! A few weeks ago with the vest she'd be 130-140!
I worked with her for the first time on eye gaze last night. I didn't even try until close to bedtime so she was already tired, but she still did great! You can tell she's working hard because her eyes do this funky twitching thing. She can't seem to do one fluid movement from one object to the next. It almost looks like her eyes are "stuttering" on their way over. No other way to describe it. But she does understand the concept. She knows what we want her to do. I think with a little practice she'll be using eye gaze to actually communicate in no time!