Avalon's Army of Angels
|August 5, 2008
Wow, what a difference a good nurse practitioner can make. This surgery, our
follow-up appointment was on the day we figured we'd just be going home! How cool
The follow-up appointment went well, I learned a lot.
Like I described in the July 30, 2008 post, the temporal decompressions are
supposed to increase the "cranial vault". The jaw muscle that now protects Avalon's
brain, is capable of "giving" a little bit, where the bone of the skull absolutely did not.
The hope is, that "give" will allow the excess fluid surrounding her brain, a larger
place to fill. The holes do not drain any fluid - they simply work to kind of make her
skull "bigger". Think of it like this, Imagine a ceramic bowl with a squishy plastic ball
in it. Put a perfectly sealed lid on the bowl and then fill it with enough water, that the
lid is just at the bursting point. If you could drill two holes in the sides of the bowl,
and cover those holes with something a little stretchy - say Sarah Wrap...the level of
the water would go down just a bit - as the Sarah Wrap stretched slightly from the
pressure. The ball that was being compressed from all the water, would have a
chance to expand a bit. The bowl is Avalon's skull, and the ball is her brain. We're
hoping the brain is happier now that its got a little more "wiggle" room.
According to Dr. Kosnik, Avalon's neurosurgeon, for every 1% you increase the
"cranial vault" - you can see up to a 20% decrease in intracranial pressure. How
neat is that? We're hoping we've helped her a great deal. However, keep in
mind...even with her shunt, her ICP was 28, when normal is 10-12. We don't know
how much we accomplished. Basically, we just have to wait and see.
Avalon will see her neuro-ophthalmologist, Dr. Benes, on Aug 25, 2008. I know that
seems like a long time to wait, but there are reasons. It takes the optic nerve two
weeks to show the results of a change in pressure. If you allow 1.5 weeks for the
post-operative swelling to go away, then two weeks for the optic nerve to react to the
new pressure...you'll see that the 25th is the best time to check her. The eye exam
will really tell us what's going on. The tests are not subjective - she can't "fudge" or
"mask" her way out of them. Either she sees, or she doesn't. Its pretty straight
And in case you're wondering, no, I have no idea what her pressure may be right
now. She's still very loud, and complaining that she can't hear the TV, both signs of
high pressure. But who knows? Maybe her hearing is damaged, or maybe she's
just adopted that as a normal behavior. She's still falling asleep in the car, but
maybe she's just recovering from 3 surgeries this Summer. She's still having the
awful panic attacks about being alone or separated. Again, is it behavior - or is it
damage from the shunt surgery? And the agitation and utter lack of patience...are
they high pressure or the result of a high stress couple of months? Who knows?
The good news is, her language has improved! She's stuttering less. Wahoooo!
She's also talking more, and not so sullen - so I'm choosing to see those as good
No matter what, we'll know something on the 25th. There is no sense in borrowing
trouble by stewing over it now. Frankly, its high time we figure out how to enjoy a
little bit of this Summer. So far...its stunk like French cheese on a pig's butt. It
"ain't" been good, folks!
So, I'm off to have some fun, clean stuff, and laugh with my kids. The 500 weeds
that need to be pulled will just have to wait their turn.