March 9, 2019
Julia's been throwing up a lot, and they're trying to figure out why. It kind of came on all of a sudden a day or two ago, and has gotten worse. Today she threw up all day long. They thought it might be Ativan withdrawal since they cut back the dose again, but a rescue dose of Ativan had no effect. Constipation is always a possibility, but she seems to be going just fine. They can't do suppositories anymore because of her compromised immune system / low platelet count, so they are just trying some oral stuff. That has been minimally effective in the past. She has been on Zofran the last few days, which can make you constipated, so they switched to another anti-nausea tonight to see if that helps. Her temp is fine, and she doesn't appear to be in any pain or discomfort, so they're really just trying to figure out what's causing it. They have her new formula and patches, but they're waiting to get the vomiting under control before they add in another factor. Other than that, her vitals are fine: heart rate 140s, ET high 40s, BP 122/86. And honestly, despite the barfing she seems to be pretty comfortable.
She's been super alert today! Lots of hand and feet movement. Her left eye continues to be open all the way, and her right eye is open halfway much of the time. The pupil still doesn't react to light or move, but she does appear to be sensitive to light, and they say that's not a bad sign / possibly a good sign (she flinches during the flashlight checks, but they're not sure if it's due to the light, or because she feels them physically poking around her eye). They are requesting the ophthalmologist tomorrow at rounds, so hopefully they can stop by and let us know what they think. We've not officially gotten word on if she can see out of the left eye, but we have no reason to believe she can't. She seems to find us alright. Maybe not perfectly, but her eye will track us if we're near the bed. So I believe she can see, but maybe not as well as before.
PT and OT are FINALLY back on the schedule. I guess she convinced the team she's ready to get better =) So they've stopped by a few times, and they will be back in Monday. She has her stroller there now, so I believe she will go for her first ride under PT guidance, possibly on Monday. I'm so excited to see her OUT OF BED! I think once she shows some upper body control (specifically head/neck control) they will start being able to sit her up more in bed. Right now she can be elevated, but honestly it's still laying down. I think stroller rides, where she has new things to look at, will really encourage improvement there =)
I was dancing her hands and feet around to her cartoon songs, and she was doing really well with her grip, so I took a short video. I guess it's not the most exciting video ever... but about halfway through she loses her grip, and then you see her grab on nice and tight. It's such a change from her having no strength at all (and an even bigger change from staring at her fingers hoping to see them twitch!) It's SO NICE to feel her hold my hand again <3 <3 She currently seems to have pretty good strength and control from the wrist to finger tips, but so far nothing from the elbow down. She tries to lift it, but I assume it's a weakness thing.
So she just has tomorrow to rest up before 5 days of chemo starts again. Hopefully they get her vomiting under control so she can get some quality sleep.
YouTube Video: https://youtu.be/6tPvGRFfVCs
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If you're new and want to know what's going on, my first post about Julia was on October 31st. You can find them all on my Facebook page or Julia's website <3