Wednesday, February 16, 2022


We may have been looking in the wrong direction.  

He may not have had an infection.

We just don't really know, at least for sure.

When someone has a traumatic brain injury (TBI) they can develop dysautonomia which includes neuro storming. Kinda like how the environment is unstable during a storm, so is the brain function in the autonomic region.  That's the part of the brain that keeps the body in homeostasis (which we really like!).  It controls body temperature, heart rate, digestion, perspiration, respiratory rate, you know, minor things like that.  Doctors are starting to recognize that kiddos with congenital brain disorders can develop this, too.

Sometimes when the weather predicts a storm, it's mild, no biggie, misting or very light snow flurries.  It might just be windy and we really don't notice.  Sometimes it's a blizzard, or a hurricane.  Sometimes it causes really widespread bad destruction. 


As we look back on the weeks before Aaron's admission, his heart rate was creeping up.  His temps were more unstable with more low grade fevers that didn't always respond to medication.  We've had more issues with digestion and constipation.  For the first time in his life, his blood pressures were not in the normal range.  Early on in his stay, they were high.  Then that awful Monday they plummeted.  

Unnoticed, unchecked, neuro storming can be incredibly dangerous.  When the body can't maintain homeostasis, the above can rampage unchecked.  Really high fevers, high heart rate, high breathing rates, high blood pressure, which can all damage organs, leading to sepsis-like issues.  And death.

We are still trying to make sure nothing has been missed.  He finished his antibiotics yesterday and cardio wants to get blood cultures the next six times he runs a fever (which may be as often as twice a day).  He's concerned that there might be an infection still lurking that would have been hidden by the antibiotics, and Aaron has some unique places that it could develop, like his floppy heart valves, the holes in his heart, and the one we just found in his femoral artery/vein.  Endocarditis would not be a good thing.  

I also want to make sure there isn't an underlying seizure issue going on.

But we've made it out of the PICU and onto the floor.  They've put us on the neuro-trauma unit because I guess that's where we fit the best this time.  It's a new one for us.  That's okay, they're taking good care of him.  Chances are better than average that we'll go home with some new medications.  They do make him less interactive and a bit more sleepy.  But he's alert when awake, and he's stable.  I really, really like stable.

“If the storm had a conscience, it could not be a storm!”
― Mehmet Murat ildan

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