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January 4, 2019

Just a few medical updates today. The external shunt will be in for another day or two until they are confident the internal one is doing everything it needs to do. Vitals are great. She's breathing really well on her own (still through the trach). Her skin under where the vest has been looks like a reptile. Eyes are still really puffy from the fluids. One of her pin holes is more irritated than the others, so that has some special ointment and a bandage.

The new scar on her head looks like it's healing great (her hair is funny to keep it out all the stitches she's got going on now). They are very happy with her left eye, which is the original one that went weird. I haven't personally seen it, but they swear it moves completely both ways right now, though she favors holding it toward her nose. The right eye is still not opening, and is becoming less responsive to flashlight checks. They're thinking it might be the cancer pressing on an optic nerve, rather than effect from the stroke. I have mixed feelings about that... but at least it means if we kill the cancer, full functionality might return. So there's that.

She will remain actively sedated "comfortably" throughout the weekend, as she's coming out of that internal shunt surgery and is getting used to the neck brace. There is also no PT on the weekend, so they don't want to rush her into alertness without all the assistance available. PT will be focusing on neck stability starting Monday, and the brace can come off as soon as the surgeons are happy - possibly a week. She also had custom braces made for both hands and feet today. These will be on/off every 2 hours just to help keep what little strength they have left. The left arm will be the only limb braced all night long. Currently she appears to have almost 0 strength. I watched them transfer her today and her limbs just hang completely limp. Her neck also must be supported like a newborn, but I'm sure that will heal in time.

So Monday she starts real PT, and reducing sedation with the intent of it going away completely. And then sometime this week chemo starts.

It was a fine day medically, and it was a REALLY GOOD day for Julia! She turned her head WAY further than we were told to expect (right toward daddy), she SMILED, and she got snuggles!! OMG this was the most content little girl on the planet for the two hours she got to sleep on Reed's lap. Heart rate and blood pressure were the best they've been in a loooong time.

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Karen Strine
Karen Strine
Jan 05, 2019

So emotional to see Reed holding Julia. Following blog faithfully. Such a precious child. Cousin Karen

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