Friday 05/22

Taylor's about the same... some good and some bad. The pancreas is a little better but the pneumonia is a little worse. They will need to drain the fluid from her lungs. The Versad medicine did not work yesterday - it could not stop her brain from "bursts" of activity. So... yesterday they put her on a new machine and a new medicine that is administred through gas. The medicine is working better at controlling her brain activity... she has pages of flat lines... which is good... but then pages of burts which is not good. But, that's more success than they've seen with any other medicine. The phenabarbitrol is still wearing off.

What is most frustrating and scary is that the doctors still really don't know what is causing this or how to fix it. This morning 9-10 doctors met with the family. All tests for every virus or other cause they can think of have come back negative so far. Some tests won't come back for a month, though. And even if they figure out the cause it may not help them help her to get better. They called Taylor's present condition "intractable status seizures"... that basically means seizures that won't stop. There is still inflamation of the brain. But the doctors cannot isolate exactly where these misfires are occurring. They will do a new type of test -- like an MRI or PET scan - but better. They will inject a dye and see where it goes, study what happens. Hopefully, this will tell them more. The bad part about this new test, though, is that they will have to move her to the main hospital - and any movement - however slight - makes her brain activity go haywire.

Lastnight family friends brought home-cooked meals for our family and to share with other families here in the Ronald McDonald's House waiting room, as others have done. We've met some amazing people here - with both heartbreaking and inspirational stories.