Our
Journey:
Avalon's Army of Angels
November 4, 2009
Surgery #1 or #5...depends on your perspective
Well, faster than we ever wanted to be, here we are again...

The entire month leading up to today has been wonky.  Last year, I was desperately seeking
support for Avalon, this time?  Barely bothering to tell people...just heavily relying on the
neurosurgery staff for my support.  They know us here, they love Avalon, they are
supportive...I'm in a horrible funk.  It's a weird place to be to find your solace in the people
caring for your child, rather than the people in your life.  Then again, several of these people
have
become the 'people in our life'.  We've made dear friends here, and I'm grateful for each
of them.

Before I launch into the day's events, I should probably explain exactly what's happening and
why.  I'm going to plagiarize myself a bit, and refer you back to journal entries from July 2008.  
"Background medical info" is my giant attempt at explaining the how and why we got to cutting
large, permanent holes in Avalon's skull.  Rather than re-invent the wheel, I'm wimping out and
sending you there for reference material.  There are also in-depth discussions about the
procedures in entries from 'first Temporal Decompression'.  So forgive me, I'm going to forge
ahead kind of presuming there is some knowledge of things I'm referring to.  Face it, I'm a lazy
boob and don't wish to have to repeat myself.  It's a shortcoming of mine...I hate redundancy.

I suppose there is poetic irony in that.  I hate redundancy, I despise repeating myself...and yet
here we are, repeating the exact same flippin' surgeries we did last year.  Ha ha...it is to
laugh...
not.  

Today's surgery is the first of three surgeries in the near future.  Avalon's intracranial pressure
is dangerously high.  It's causing a myriad of issues, and her behaviors and clinical signs are
clearly showing she cannot tolerate such extreme pressures.  We have to work to reduce
pressure, and today's surgery is the first step to doing that.

Dr. Kosnik is operating today to re-open one of the temporal decompressions that he created
last year.    The temporal decompressions are large, permanent holes in Avalon's skull,
located near her temples, behind the main jaw muscle.  The brain is relatively deep at the
points where the holes are, and the jaw muscle is very thick and strong.  The muscle acts as
the new protection for the brain, however, it is somewhat flexible.  By creating these holes, Dr.
Kosnik has increased the 'effective cranial vault'.  Because the jaw muscles can flex under the
high pressure of spinal fluid (bone does NOT flex) it's like making the skull a bit bigger.  If you
give fluid a larger place to fill up, the fluid spreads out...reducing the amount of pressure it is
putting on the brain.  Think of it like this.  If you filled a small balloon extremely full of air, it
would be hard.  If you could then magically stretch the balloon a little further...the air would
spread out, and the balloon would be squishy again.  We're trying to make it so that Avalon's
brain has someplace 'squishy' to live again.

We're having to revisit the decompressions because they have grown over by nearly 50%.  Dr.
Kosnik said it's to be expected because of her age; she's still growing and her skull is still
forming new bone.  We wondered about that last year, but I guess we didn't ask enough
questions.  As you may well imagine, one of my biggest questions now is,
Are we going to have
to do this several more times?!
 The thought makes me ill.

The only good news in redoing a surgery, is that you know what to expect.  We know how
recovery went last time, we know the people taking care of her, and we know how much the
decompressions helped last time.  We
know all of that...but it's not any easier to live with.  

So, now that you're up to speed on what today was all about, I suppose I should get to the
particulars of the day.  Here goes.

Tuesday evening we received the typical pre-surgery phone call, surgery time, when to report,
when to quit eating, etc.  However, there was a bit of a snag this time.  Rather than arriving at
the Surgery Unit 2 hours early, we needed to arrive
three hours early.  It seems that the lab
made a mistake with her bloodwork on Wed of last week.  Somehow, they couldn't/didn't/forgot
to/whatever type and crossmatch her.  We'd have to come in super early so that blood could
be drawn for the type and cross.  That should have been a tip off...today was going to be
interesting....

Neurosurgery OR scheduling is done by difficulty of the operation.  The longer/more difficult
cases go in first.  Avalon was scheduled first for the original two decompression surgeries.  
Today, she got bumped to second.  That meant a more difficult case in front of her - and
possible delays.  Oh, if we had only known...

Of course, we didn't know - so we set off on our merry way this morning expecting things to go
smoothly.  Because Avalon was scheduled into OR at 11:40, they asked us to be there at
8:40.  Grammo and Pappo arrived right on time and we were out the door when we wanted to
be.  We had our first indication of trouble with the van only a few miles from the house.  Nick
noticed the oil pressure was dropping rapidly, but we knew we needed to stop at CVS to drop
off pictures, so we decided not to worry, it would have a chance to rest.  

My CVS trip was fruitful.  I not only dropped off the images I needed duplicated, I managed to
find a few Halloween goodies at 75% off.  I scavenged a creepy skull pen, perfect for a little girl
whose skull is being hacked apart.  I also found a purple, glittery pumpkin cup.  Last week in
the hospital, we were constantly spilling things on Avalon as we tried to help her drink laying
down.  The purple pumpkin has a lid and a bendy straw with a little monster hanging on it.  A)
it's cute, B) we won't drown Avalon when we help her drink, C) it was so cheap it was criminal!  
Check, check...good bargain.  I also ran away with a Halloween Barbie and an animated dog
that sings and dances to "Witch Doctor".  A good distraction haul if I've ever seen one!

Once we were back on the road, it became apparent we were about to be in giant piles of caca
with the van.  Oil pressure was refusing to hold...falling, then slightly rebounding, then falling.  
Sure enough, smack in the middle of the highway...it was GONE.  Oh yeah, on our way to our
daughter's
brain surgery and the car croaks.  Neat!

We pulled over and turned the car off, knowing we'd have to wait a while for the engine to rest.
 We'd been at CVS for several minutes, and it only bought us a few miles, this was fixing to be
a neat trip.  

Once we were back on the highway, we heard crazy honking.  We looked over to see my
sister, Annette, next to us - waving wildly.  I quickly called her and gave her the low down on
the van, in case it died again and we needed her to ferry Avalon and I to the hospital. We
followed her as far as we could on the highway, until we had to part ways because we go
different directions.  The van spent a good part of the way threatening to die...but we limped it
until we got off the highway.  Nick turned it off as we sat on the exit ramp, trying to buy us more
time.  It did, we made it off the exit ramp, and onto the road the hospital is one before we had
to turn it off again...  But we did eventually make it...nearly exactly an hour late.  So much for
that extra hour they wanted.  I was stressing out, but as Nick pointed out, we got there in time
for normal check in (2 hours early) I guess the lab would just have to hurry up.  Technically it
was their mistake in the first place - so we decided they owed us.  (rationalization is an
essential tool)

While we were sitting on the side of the highway, I had called the hospital to warn them we
were having car trouble and would be late.  Sidebar,
that whole attempt had been fun.  For the
life of me, I can't figure out why you would hire someone who is less than proficient in
English
to be one of the hospital
operators.   I mean, c'mon shouldn't the person who fields phone
calls be able to UNDERSTAND what in the Hades people are asking for?!  Just a thought...  

You may guess from my ranting that my first phone call didn't go well.  I asked the operator for
"The Surgery UNIT, preferably registration please, I need to tell them we're running late."  
Surgery Center?  You want Surgery Center?  "No...Surgery Center is outpatient.  I need the
Surgery UNIT - registration/administration, someone I can tell we are late for our arrival."   
What I
got was the Surgery CLINIC - so I could request a surgical consult or report a problem
with my child's incision.  OK, try again.

Second round, I held my breath and hoped for a new operator.  Nope - same one.  (yet
another clue this day was going to be interesting...)   "Hello, Operator X, I still need to speak to
the Surgery UNIT.  You sent me to the Surgery Clinic - and I don't have anything to say to
them.  (they're not even doing the surgery - Neurosurgery is)  May I please have the Surgery
Unit?"  
You want the nurse's station?  "Umm...No.  I want the Surgery UNIT.  Not the nurse's
station on the unit, not the Surgery Center, not the General Surgery Clinic...I need registration
for the Surgery UNIT please."  
Oh.  You didn't say that.  ...Ooooof course I didn't....  What was
I thinking?  My bad, so sorry to have bothered you....  ACK!

While I did eventually talk to
someone in the Surgery Unit...we're really not sure who in the
Hades it was.  When we got there and checked in, REGISTRATION had no idea we were
running late.  None of them had talked to me and whomsoever answered my call, never shared
the information.  Nor did they have any idea we were supposed to have been there an hour
earlier.  At least I presume that, since they were in no hurry to get us processed.  

The whole reason you have to report to the Surgery Unit 3 hours early is because of the
insanity of the hurry-up-and-wait game.  First, you walk in the tiny receiving area and sign your
child's name to a list.  Then, the receptionist might call you up to talk on the phone to hospital
registration (which is in an undisclosed secret government location and not affiliated with the
registration clerks sitting in front of you)  The phone detective makes you reiterate scads of
personal information
out loud, in front of everyone else in the room.  Arguably, everyone in
there is too worried about their own child to write down your SS number, date of birth, and
complete address - but they could.  And let's face it, getting sick is not the sole domain of
children of respectable citizens.  Slimy people have broken kids too.  It'll be my luck to share
the waiting room with the next Atilla the Hun some day.  I'll come home to an empty house, a
mangled dog, and a note:  
Thanks for making this so easy.  We've cleaned out your bank
accounts too.  Hope your daughter's surgery went smoothly.

After the phone interrogation, you're sent back to waiting purgatory.  Eventually, you're called
to a cubicle-wannabe, for yet another round of out-your-info.  For a hospital that's so
dad-blasted fruit-loopy about HIPPA - they have chosen to dance naked in the Supreme court
when it comes to registration and privacy.  The cubicles are simply boards that separate a
shared desktop.  And oh-this-is-hard-to-guess, they sit right in the middle of the waiting area.  
As you go over surgical details, doctors, diagnosis, all that supposed sacred info - other
parents/kids/the human population of Detroit, is sitting inches away.  Privacy like this ranks
with peeing in prison.  

Non-privacy aside, the registration clerks were very sweet today.  I've been a much happier
registrant since they got rid of 'Rose' the registration Nazi.  She was a cranky old bat and I
danced when I heard she'd retired.  Today's clerks were smiling and friendly.  I was being a
smart alec as we sat in the haffa-cube, making snarky comments.  The clerk laughed and kept
up with us in ornery and funny.  He was a pure joy, and a good way to calm me down from the
travel portion of the morning.

After you register, you are again sent to the 'wait' zone.  Eventually, a nurse or PCA come out
and call you to the back.  On the way to your pre-op room you stop and get height and weight
of the child.  I have some cracker crazy mental block when it comes to height.  I can always tell
you Avalon's last weight, (23.5 kg) but danged if I ever remember the height.  I think its 115cm,
but don't quote me on that.  

Finally, you land in your pre-op room.  The one thing the Surgery Unit has on the Surgery
Center are the private rooms.  Each child has a private room for pre-op and recovery.  The SU
does some outpatient procedures, so there are times patients return there to recover.  When
you're staying in-house, they go straight to the floor from PACU.  The SC is still all gang
warfare.  Gurneys are in large spaces, separated by curtains.  Most of us don't spend too
much pre or post-op time there, so it's really not a problem.  

Once you're in your room, you are supposed to change into the hospital pajamas, and have
the nurse do your physical assessment.  Avalon mucks with the system.  She prefers to do her
assessment, then walk to the Toy Room in whatever finery she arrived in, before she changes
into her PJs.  Brass tacks, she likes the attention she gets for her various costumes or outfits!  

The nurse assessment always makes me laugh.  Of course they do vitals (BP, HR, temp) but
they also do a full lungs/eyes/neuro work up.  The thing is, the exam is fast and furious, and
I'm not really sure what they're looking for.  I can't tell you how irritating it's been to have to
show up 2 hours early for this 'exam' - when the day before, Avalon's Oncology NP had gone
over her with a fine-toothed comb.  I realize that's not the case for all kids, but cripes, I think
we've deserved a 'pass' a time or twelve.  

After the check in exam and vitals, Avalon is finally released to go to the 'Ocean Room'.  There
are little "Nemo's" all over the unit with their noses pointing toward the Ocean Room.  Once
you get there, each child is allowed to pick ONE toy as an owie toy.  The decision is a painful
and long one.  There is so much useless crap...um marvelous treasures...to choose from. It's a
painstaking process, and one that must not be rushed, lest she leave with something that is
not her heart's desire.  Today Avalon chose a small light up toy.  Its a plastic sphere on a stick
that has a rotating light source inside of it. It's a 25 ticket toy at Chuck E Cheese, so you can
figure it cost the hospital about 25 cents.  Quite the bargain for something she deems
"Fantastic!"  

After we secured the magic wand of wonder, it was time to get Avalon back to the room, into
pjs, and ready for the nurse to come draw the blood we needed for the type and cross.  That's
when bomb number one hit.  It was 10:30 and the nurse told us Dr. Kosnik had just started his
first case.  We could figure he would be
at least 1 and 1/2 hours behind schedule.  Deep
cleansing breath...
okay we can handle this.  That meant surgery no sooner than 1:15...out
around 3:30...recovery until 4:15.  OK, time to make some phone calls and get everyone up to
speed.  

Since Avalon was already griping that she was hungry, we knew it was going to be a long day.  
In other words, let the distraction begin!  I let her open up the new Barbie.  We hit the nurses
up for crayons, since I'd been smart enough to bring coloring books, but dorky enough to
forget crayons.  We watched TV, talked with nurses, and had lots of discussions about
anything Halloween, Trick or Treat, or little girl you can think of.  We finally let Avalon open up
her big 'owie' present this morning, a new doll.  We even hit up the pre-op nurses for a
hospital gown for the doll, hoping to distract her that much more.  

Eventually, we saw a familiar face.  The anesthesiologist came in to do the pre-surgery
consult.  We
know  this anesthesiologist, and we owe him.  He was the one in the room for the
catastrophic surgery.  We haven't seen him since, so it was nice to be able to finally hug him
for that day.  I didn't have to say
it, I just looked at him, and told him I'd been waiting a year to
hug him.  I'm tearing up as I write this.  So many wonderful people that day counteracted the
one demon to keep her here with us.  Mere words or hugs will never be enough to thank them
all.  But believe me, every time I've accidentally gotten the chance to say "
Thank you" I've
done so with all my heart.  We owe our daughter's life to them...I know it, and I am eternally
grateful for it.

I didn't accost the doctor (whose name I do know, but am purposefully not mentioning) until
after we had the pre-op discussion.  I told him all that had happened with her veins during the
last stay, and where the biggest infiltrations and blown veins had been.  I told him we'd kept
the left foot pristine for today, so that would be his best bet.  He agreed, and thanked us and
the IV team for being smart enough to protect it.  
Then I hugged the stuffings out of him, and
thanked him profusely for everything.  

As he was leaving, we asked if he had any idea about time frame.  Hello bomb number two - he
said potentially another 1 1/2 - 2 hours.  UGH.  He made reference to chipping away at a brain
tumor, which verified what we had expected.  Dr. Kosnik doesn't like being behind schedule.  If
he started late in the first place, I guessed there was probably an issue with a scan or
something that was integral to the operation.  We also figured a brain tumor with how long it
was taking.  While the being hungry thing stunk, the rest of it was certainly no stress to us.  
You couldn't line up a more understanding bunch - we're heme-onc-ers.  We not only
understand brain tumor junk, we're totally supportive and understanding of it.  Our biggest
concern?  Nick and I were worried about the parents of the child.  We knew we couldn't go
looking for them, but we both wanted nothing more than to go give them hugs.  Been there,
done that...we knew where their heads were.  We empathized so much, we ached for them.

The afternoon passed much like the morning, trying to distract a hungry 6 year old.  Carrie
stopped in to say 'HI' and chat for a bit.  Several of the unit nurses stopped in to see Avalon's
Halloween wheelchair and get caught up with her.  She colored more pictures while I
cross-stitched, and she watched lots and lots of mindless television.  Of course, all of it was
punctuated with an "I'm hungry" that appeared on about a 10 minute rotation.  According to
Nick, I also complained on a rather regular interval.  I think he's making that up, but in my
hunger-induced semi-coma...I'm in no shape to dispute him.

Why was I hungry too?  Because we have a hard and fast family rule, if Avalon doesn't eat,
neither do we.  The siblings don't ever eat or drink before we leave the house.  And we don't
eat or drink at all, until she's in surgery.  If it's just an MRI or an LP, then I wait all the way until
she's fully recovered, and we have lunch together.  When it's a 2 hour surgery, we go and eat
as a way to pass time and calm ourselves down.  Because no matter how much faith you have
in a surgeon, mucking around in the brain is scary, and I NEED distractions.

Nick and Avalon passed the final waiting hour in a fight-to-the-death game of Memory with a
student nurse.  I happily relinquished my spot to the student with the excuse of getting caught
up with a few of the nurses.  Truth is, I'm hopeless at Memory.  Avalon crushes me every time!  
I decided I'd save my humiliation for another day.  Losing "Memory" to the brain-damaged child
is a smidge deflating.  (she LOVES it!)

Finally, finally, FINALLY...they came to get our princess.  We walked back the hallway with her
to the OR doors.  That's when the panic hit.  All of a sudden, you could see it in her eyes - the
terror of the known/unknown.  She did her best to be brave, but you could see it as plain as
day...she was beside herself.  As we kissed her, she began sobbing, begging us to go with
her.  Of course we couldn't, so I reminded her that Dr. Kosnik loves her, and that he would
take good care of her.  I told her to ask him for a kiss on the forehead to make her feel better.  
The nurse promised she'd tell him to kiss Avalon, and that seemed to satisfy her.  She wasn't
happy as we parted, but the panic seemed to be coming under control.  We've often been told
that no matter how sad she seems as we part, she quickly cheers up once she gets to OR.  
Avalon is notorious for being chatty and friendly once she's there, so we could walk away
peacefully knowing she would calm down in a few minutes.