This is like a tide

Or more accurately, a storm surge. Great news this afternoon from the BMA. Everyone happy, relieved, etc. Derry and I head home to take care of things here.

Then a call. Scott is acting very strangely. No reason to get into details, but he seemed disoriented and "lost" according to Stephanie. This resulted in very much concern with docs and nurses. A CT of his head was ordered to check for bleeding. That was done and we can already report it showed no bleeding. Showed no aneurysm (sp?) or stroke. That's great news too.

But Scott hasn't changed. He's still vacant and lost. Sat down on bed and was confused like he didn't know how to lie down. Very strange things (that's not the only thing he's done). He doesn't seem to know who Stephanie is either.

Next he's off to an MRI, which will be done tonight at some time as well.

We will be pushing the docs for a spinal tap to be done tomorrow. Would have been easily done today, but hindsight is 20/20. Logic dictates he shouldn't have relapse in his spinal fluid because a) he's never tested positive in his fluid and b) if his marrow is still fine he should not be positive in the fluid because the bad stuff is manufactured from bad marrow cells.

But the tap can test for that, as well as viral and bacterial meningitis.

Needless to say, the euphoria from today's first "big" worry wasn't long lived. Great news for the second time with the negative CT.

But we still don't know the root cause of his fevers OR this very abnormal behavior. Back to borderline window-licker status for us. No rest for the weary in this fight. Like Stephanie said - we just want our smiling little boy back doing all of his accents perfectly. I want to hear him mimic my voice message on my phone. He calls it some time just to make fun of me. I just want a message from him because he's just being a goofy little boy.