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December 20. 2018

Well Julia has a bunch of fancy new leads on her head, as you can see in the picture. And her new leads came with a new monitor and an entire camera at the base of her bed to watch her! This is because her left eye didn't respond to a check in the early hours of the morning. They immediately got her down for another CT scan. There was nothing concerning on the image other than one ventricle remains slightly enlarged, as they already knew. Her eye has since responded as expected. But they wanted to hook her up to watch for seizures. So this new equipment/camera has some sort of seismograph functionality. They have not caught anything since that one episode, so she's currently just being monitored.

They introduced a new medication to help ease "nervous system discomfort", which is making her very tired. They think she might be over-stimulated with everything that's been going on, so they wanted to help reduce her agitation while she heals. So she's done a whole lot of sleeping today. But you'll notice in the other pic that ENT has approved her pacifier again, and she has given daddy a few good stare downs. Her eyes are doing MUCH better today! They are far from perfect, but this is way better than I saw yesterday.

Her left arm has continued to be abnormal. It goes from ice cold to hot and pink. They did another ultrasound and finally found some clotting around the picc line. They said this is not unexpected, as with veins so small, the picc line is pretty much the same diameter. As it naturally shifts around, it can sometimes block or blood / release it, and this could explain the temperature changes. They are not concerned at all (not even enough to remove the picc line), and said they might look into treating it with blood thinners when the time is right. They explained the difference between clots in veins vs arteries to Reed. Apparently clots in arteries are a big deal because they push blood TO organs, and can cause all kinds of issues if they cause a block. The veins perform a different function and apparently a clot in there is not nearly as big of a deal, and something they can delay treating if there are other considerations.

In non-medical news, we got an invite to attend a gift event CHOP does around the holidays for the kids staying in the hospital during Christmas, so tomorrow Charlene and I will go see if there is a gift we can bring back for Julia.

So today was an OK day... considering the early morning scare. I'm hoping for just steady improvement over the next week so we can really start treatment.

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