MRI results

Another really good day. The MRI results finally came back, and they showed no impact of HLH on Sam's brain. Which, obviously, is an enormous relief.

The MRI--and the prospect that Sam had suffered some kind of brain damage--has been lurking out there almost since the initial diagnosis of HLH, when Dr. Greenberg (the team leader) uttered the vaguely euphemistic phrase "brain involvement" in reference to the HLH. The hypothetical became a bit more real when the first spinal tap found evidence of HLH activity in Sam's spinal fluid.

Sam first went for an MRI 10+ days ago, but he wouldn't sit still for the exam. Then he went on the ventilator, and for whatever reason the PICU staff waited a full week to take the sedated (and conveniently motionless) Sam back to MRI for another attempt.

I have tried not to think too much about brain damage. It's very upsetting, and though potentially serious, we haven't had much emotional energy to spare. It's also somewhat abstract--it could conceivably take years to reveal itself. So, first things first.

Plus, I was optimistic. Since Sam came off the vent yesterday, he's seemed very much like himself. He's vocal, he wiggles around, he makes solid eye contact, he chomps away at his pacifier. His body has nearly always seemed to behave as expected. His major organs, although occasionally taxed from the treatments he's receiving, have always operated properly. Sam has not shown evidence that any of his most important pieces and parts--except for the broken immune system that brought us here in the first place--are defective or otherwise malfunctioning. These are all good signs.

As such, I'd quietly and hopefully been telling myself that maybe he hadn't suffered any neurological damage. Or, if he had, that it was really minor.

Even so, when the doctors told us this morning that the MRI showed nothing abnormal, I made them repeat it several times. "So you're saying it's totally clean? No damage? Normal normal?"

Yes, they said. Each time.

And that ultrasound? Not sure what that's about, they said, but not to worry. Ultrasound is not nearly as powerful or precise as MRI, so if nothing shows up in the MRI, there's nothing there.

Good Great answer.