Our
Journey:
Saturday October 17, 2009
Day 3
Avalon's Army of Angels
Horrible, awful, unfair, rotten day.  Anna and Avalon looked forward to spending time together.  
Anna had her LP yesterday, so her pressure is low for a few days, and she's feeling fine.  
Avalon is bored to death and missing sibs something fierce, so she needed the distraction.  
Seemed like a perfect combo, until Avalon crashed.  Avalon and Anna Marie tried to play
Trouble again, but the pain became too much for Avalon.  So, Anna had a new idea.  She
brought the floor's Wii into Avalon's room, and we turned Avalon so she could continue to lay in
her favorite position while watching Anna play.  It turned out to be too much.  Avalon's heartrate
skyrocketed into the 150's, and her pain was out of control.  

Ultimately, we determined that any excitement is currently too much for Avalon.  Happiness is
as detrimental as sadness right now.  When Grammo and Pappo visited, they also caused a
heart rate issue and pain crash.  Same with Anna.  Basically, when Avalon gets happy, her
heart rate goes up, increasing blood pressure and CSF pressure.  When CSF pressure goes
up, it pops any potential seal on the spinal column and CSF floods out, causing intense pain in
Avalon's head and back.  Translation, Avalon MUST stay quiet, bored, and preferably in low
light.  

Great.  So here we are, Joy and I, desperate for someone to chat with, with two little girls who
like each other, but can't interact.  We spent the day trying to explain to two little girls, they like
each other so much, it's dangerous for one of them.  That's nuts!  "
We're sorry, Anna.  But you
can't go in Avalon's room.  She likes you so much, you make her sick."  
  Seriously, if it wasn't
so true and so sad...it would be laughable.  Joy and I watched, a mere "Hi!" from Anna would
send Avalon's heart rate up 20-30 points!  It was as crazy as it was heart-wrenching.  Anna is a
"big" sister who is missing her "littles" and Avalon is a "little" missing her "bigs".  Such a perfect
match, so much pain because of it.  I know it's small compared to some problems, but for today,
this was tragic.  

Avalon's normal GI issues are rearing their ugly heads.  I finally requested a GI consult today.  
Avalon is a slow motility patient.  (her bowels don't empty quick enough on their own)  When
Avalon gets dehydrated or deals with GA, she can easily and quickly become impacted.  
Morphine has a very serious affect on motility too, so I knew we'd best at least communicate
with the GI docs, so they knew what was going on.  As it turns out, Avalon's own GI doc was the
one on weekend duty, so I knew who I would be dealing with, and he knows her.  

First, the GI resident came in.  She took the history, and began her lengthy discussion of what
all we needed to do.  Of course Miralax is the first drug of choice.  I agree, that is, I agree if
Avalon is taking in fluids!  Thanks to extreme pain and nausea, very, VERY little was actually
going IN Avalon, and certainly no where near enough to get copious amounts of Miralax in the
system.  Besides, the more Avalon gets backed up, the less you can put 'in'.  She won't take it.  
(makes sense, doesn't it?)  The residentcame up with two 'bright' ideas.  First, she suggested
doing multiple enemas.  Second was to go straight to an NG tube (naso-gastro tube) so we
could get lots of "go lightly" (a big guns laxative).  Now let's think about this.  Every time Avalon
gets too happy, or too STRESSED, her heart rate skyrockets and the increase in CSF
pressure re-opens the hole in the spine.  So...how do you think she would feel about having a
tube either rammed up her rear-end, or shoved up her nose?  I don't know about you...but I'm
almost certain that would fall into the
stressed category.  

A while later, Dr. DeLorenzo himself came in.  We had already run into each other on the floor
before the consult was officially placed, so he knew we were there.  He asked a few
intelligent
questions, and oh shock-of-shocks asked what I thought.  I said, "Why can't we try a few mLs of
mineral oil?  It works great at home."  He agreed immediately, and said he wanted an
abdominal x-ray to see how much back-up we were dealing with.  I agreed, he grinned, he left.  
Hmmm....any wonder residents irritate the CRAP out of me?!!!

Any resident, medical student, or other medical type who may some day read this.  I have a few
crumbs of advice for you.  One, pay attention to parents.  Shock of the ages, some of us
actually do have brains rattling around in our heads.  Two, you are NOT GOD.  No matter how
many years your mother has implied it, you are not omnipotent or all powerful.  You are a mere
resident...you have monstrous piles of stuff to still learn.  You would be far wiser to recognize
that than you are to pretend you are holier-than-thou.  Three, the biggest and fanciest is most
certainly not always the best.  Sure, modern medicine has made great strides, but often, old
ways are not only still viable, they are preferable.  It would do you well to take the time to learn
them too.  And finally, as a resident, you should always be mindful of one solid fact that any
medical mom can clearly tell you...a good nurse TRUMPS YOU on any given day.  Nurses can
often
bury doctors in what they know.  Sure, sure, you put more time in school.  But a
knowledgeable caring nurse is worth her weight in platinum, or whatever metal commands the
highest price at the moment.  
LISTEN to the nurses, you may actually learn something valuable
for once.  

OH and one more thought...NO ONE is friendly at 6:00 in the morning.  Get over yourself!  
Avalon can't sit up, and didn't feel up to playing Trouble today.  So...Anna Marie brought
the Wii game in.  At first, they thought Avalon could still play laying down, but Avalon said
she didn't feel like it.  She was happy just to watch, and to be
with Anna.
Sadly, Avalon was 'too happy'.  The rise in heart rate must have risen CSF pressure enough to
reopen the leak.  Avalon began to feel really bad, really fast.  These pictures were taken only
minutes after the Wii pic.  Avalon is absolutely MISERABLE.  Although, the Dorito face still makes
me smile...