December 28, 2018
Julia kept everyone up all night with her constant snot-gagging and vomiting. Reed is very tired today. They believe the massive amount of mucus that is (finally) being brought up just keeps triggering her gag reflex, and because her stomach is always full of feeds, she barfs. So they don't currently think any meds are irritating her, they think it's just a physical reaction.
They decreased her fentanyl again, so she's extra agitated and has an elevated heart rate, they believe from another round of withdrawal. She is still under a mild non-narcotic pain relief/sedative just to keep her more comfortable. They're looking into a different anti-nausea med (or stopping it altogether) to help the constipation.
She had her 3rd day of PT. They came in around 10am and started with moving and stretching everything, and then with the help of 4 people, they got her out of bed and into a chair! She made her displeasure very clear, but she exhausted herself with fussing very quickly and ended up peacefully sitting for a good amount of time. They tried to get all the normal PT reactions out of her, but really only got some kicking feet. No improvement with either arm strength, but no one is disappointed for day 3. Her session today was about an hour in total, with about 30 minutes of it in the chair. Everyone seemed very satisfied.
You'll notice her right eye is droopy. I believed that was from the halo pressing down on her forehead (it's not centered symmetrically above the eyes), but Reed told me today they believe it's actually from the stroke =(So that was really sad to hear. It's too early to say if it will improve or not. Her left eye got bad before the surgery, just from the cancer progression. That's the one that wouldn't look past mid-line, and was kind of resting in a cross-eye position. So to now know she has 2 bad eyes is very sad. One thing I kept reading about during my research into pediatric cancer is loss of vision, for all kinds of reasons... I hope we're not headed that direction. Reed did say that her increased level of irritation can encourage her to open it a bit more, so at least it's still physically possible. The good news is she showed improvement with her LEFT eye. He said she was tracking him all around the bed, even giving him a good "left side-eye glare", which I haven't seen her do in weeks. I told him pix or it didn't happen, but he didn't have his phone. But even in the picture, her left eye is straight ahead which is also better than I've seen since her stroke. So... I guess there is hope for both.
Our next big day should be Monday. And I'm nervous for it. Her antibiotic finishes Sunday, so Monday she goes down for a full set of scans. At that time they will determine if the infection has been cleared up, if there is any additional damage from the stroke, what her cancer progression looks like, what her bone/fusion healing process looks like, and what all her surgery locations look like. She'll be completely re-evaluated as far as what to do with PT, ongoing medications, and most importantly, chemo.
Reed blindsided me with the news that they have mentioned "more than once" today, the possibility of removing the halo on Monday(!!!) He stressed that I shouldn't get my hopes up, because it does all depend on scans. But based on what her previous scans looked like... it's gone from a casual mention to the doctors actually talking to him about the surgical process and saying "maybe Monday". So that's just insane. We were told mid-February... so that's what I've been expecting. The thought of being able to give her real hugs and kisses as soon as next week is really too good to think about, but I'm going to anyway!
Other than that, she's continued to do her family roll call, and is emphatically requesting "baby", so I'll need to get him down there for a visit this weekend =) She also gave her silent "yes" motion when Reed asked if she'd like some cartoons. So two good mental signs today, and good PT progress =)
