Our
Journey:
Avalon's Army of Angels
Thursday October 15, 2009
Leaking and miserable
We started the morning early.  We headed into neurosurgery clinic first thing.  Turns out, I'm
really, REALLY glad we did.

By the time we got up to clinic, Avalon looked really bad.  I immediately hit up Margaret (Dr. K's
nurse) for an emesis basin, and told her I thought we were in trouble.  One look at Avalon, and
I think Margaret knew it too.  Unlike normal, it didn't take long for Margaret to get us into a
room.  From there, things happened really fast.  

Dr. Kosnik came in and had barely asked Avalon and myself what was going on when Avalon
started violently vomiting.  Dr. K said it was definitely low pressure and began directing a
woman I've never met on where to find things in his office.  As she popped back in with a larger
basin and washcloths, I finally got to be introduced to Ellen, one of Dr. K's wonderful daughters.
 Ellen couldn't have been nicer!  Here we were, "nice to meet you!" "you too, I've heard so
much about you..."  all over a little kid yacking her brains out.  Avalon was
beyond miserable.  
All of a sudden, she grabbed her chest and began saying she couldn't breathe.  She reached
out to Dr. K. and looked terrified, explaining again that she couldn't breathe, she couldn't get a
deep breath...

Dr. Kosnik assured her she'd be better when we got her laying down.  He directed Margaret
that Avalon was to stay 100% flat, and that all tests would need to be carried out via a gurney.  
He went on to add more tests than just the 3D CT scan we were originally scheduled for.  While
Dr. K and Margaret worked on transportation and scheduling, Ellen was nice enough to stick
around and help me bat clean up, as well as distract this very stressed-out-mom from what had
just happened.  Turns out, we've got a ton in common!  Ellen was kind enough to share a really
neat quilting idea with me, something I've always wondered about.  Basically, Ellen and I had a
lovely chat until Magical Margaret appeared with what was to be Avalon's temporary chariot.

When Margaret appeared, she reported the most insane discussion I've heard in a while.  
Margaret had called down to hospital transport requesting "transport" for Avalon to her tests.  
"Is she in-house?"  "
no"  "Oh, then we can't move her."  "Dr. Kosnik has ordered she has to
stay flat...we have to move her on a gurney.  She can't sit up."  
"Sorry, but we don't have those.
 We can't move her."  In other words, Avalon
needed a bed, needed to be moved while
remaining flat...but
transport COULDN'T possibly do it.  Right.....  Makes sense, doesn't it?

Somehow, Magical Margaret appeared with a gurney labeled "PACU".  I don't know how she got
it, I'm half way sure I don't want to.  But..."got it" she did, and she took us down to Radiology
herself.  Normally, parents self transport/travel to Radiology/MRI for tests, but I whole-heartedly
admitted I would likely be treacherous trying to navigate with a gurney.  In the interest of patient
safety, I deftly removed myself from the equation.  I admit, I'm a sucky bed driver.  

Once we got to Radiology, Margaret signed Avalon in, told them she'd be faxing down new
orders for even more tests, and went back upstairs to get the orders in place.  A very sweet
clerk, whom we've known for years, called me over for registration.  She asked what was going
on that we needed the gurney, knowing we normally use Avalon's chair.  She also asked about
the additional tests, and even went so far as to check the system to see if they'd been officially
ordered yet.  When they weren't, she was kind enough to go ahead and put Avalon in the
system for them, knowing Margaret would be sending in the paperwork within a few minutes.  
By taking the initiative and being so pro-active, she saved a very tired, very ookey little girl from
an even longer wait.  The clerk was kind, attentive, and very thoughtful...all the best of what the
hospital can offer.  Its a shame people like that are often yelled at by parents or berated by
their bosses.  She did everything with the patient in mind, and I'm grateful!

Once in the back, Avalon's CT scan was quick as a wink.  As per normal, she was an incredible
trooper.  The tech was super nice and let me take pictures.  Avalon has done so many of
these, and its hard to describe them to sissies, when they've never seen one of the machines.  
Besides, as I fervently hope this will all be a distant memory some day....(let me live in my
delusions)...I want  Avalon to see how brave she was at such a young age.

After CT, we headed over to the regular x-ray section.  We got a tech we know very well.  She
was glad to see Avalon, then paused and had 'the look'.  'The look' has happened ever since
the catastrophic surgery.  It happens every time Avalon goes for a new test or whenever we run
into people who knew her well "before" and can see the difference "after".  'The look' takes on
a VERY concerned over-tone if the test/appt has to do with a brain function.  If the person
offering the look had anything even remotely to do with that god-forsaken surgery....'the look' is
as apologetic as it is sympathizing, as it is heart-felt distress.  No matter what the motivation, I
recognize 'the look', I've seen it too often to miss it.  Today's intent was similar to many, many
others...
please, please...promise me 'He' isn't going to be allowed near her again.  No problem,
friends...this momma will never be that stupid again.  Avalon was butchered once...it's my life's
job to make sure it never happens again.  It's bad enough I allowed it to once.  I'll never forgive
myself for May 2008, I promise all of you 'looking'....it will NEVER happen again...  

In the meantime, every time I get 'the look', my heart swells.  'The look' means caring, concern,
and selfless love for a child that isn't theirs.  'The look' represents the best that medicine can
offer - people who care deeply for their patients.  'The look' is the exact antithesis of what
administration has shown.  That 'look' is priceless to me, please never quit sharing it with us....

The x-rays were also very quick.  Dr. Kosnik had ordered a shunt series to help give him a full
picture of what was happening with Avalon.  With the two skilled techs we had, the series went
quickly.  They were also very nice about being careful with keeping Avalon as flat as they could
during transfers to and from the table.  Oh, and I should say here, Avalon arrived for today's
testing all decked out in Halloween finery again.  This time, it was in her gold fairy costume from
last year.  When you feel six shades lower than crap...it's nice to have people telling you how
beautiful you are...  Distraction is worth a zillion dollars.

After x-ray, our friendly tech was kind enough to help me transport Avalon to MRI.  They tried to
call the 'transport' team, only to be told roughly the same as Margaret had been, "
we don't DO
that."
 Sure, sure...why would the 'TRANSPORT' dept possibly transport a kid on a bed
between departments?!  I mean, seriously, what on earth were we all thinking?

So...as I said, our x-ray tech helped move Avalon to MRI.  We arrived in MRI fully expected,
because our nice clerk friend had gone out of her way to get Avalon in the system.  All in all,
this day was going much more smoothly because a couple of people went out of their way to be
nice.  Was I happy about the transpiring events?  Nope.  Not one bit.  But...it was impossible
not to be grateful to be surrounded by such kindness.  Turns out, it had only just begun...

We caused a bit of a ruckus when we arrived in MRI.  Usually, kids are ambulatory when they
arrive, unless they are brought from ER or the floor, when the dept knows to expect a bed.  
Showing up with said bed unannounced, caused a bit of a traffic problem.  No worries, the
wonderful MRI nurses had it all in hand in a minute or two.  I should note here, MRI is another
one of our favorite departments.  Sure, we have had one bad experience there, and a
particular tech/nurse is on my don't-like-her-much list...but as a whole, the department is
fantastic.  The charge nurse went out of her way one time to help me battle a difficult doctor
(she went behind his back and called Avalon's attending onc) and she holds a special place in
my heart.  You also need to understand, Avalon has had a ridiculous number of MRIs.  She's
had them for brain issues, spinal issues, and bone issues.  She will continue to have them
regularly for the rest of her life.  I would guess she's already racked up more than 2 dozen of
them, maybe more.  In a department that normally sees kids once, maybe twice, Avalon is one
of the stand-outs.  They know us, and they are always as sweet as sweet can be.  

By the time we got to MRI, Avalon's pressure was stabilizing because she'd been flat for quite
some time.  She was back to her friendly self, and quite willing to chat up the staff.  She wasn't
happy about having to do the MRI unsedated, but promised she'd do her very best to hold still
as long as she possibly could.  Avalon did her last brain MRI without sedation too.  She was
traumatized and very, VERY unhappy afterwards.  She told Dr. K., "I won't do that again, thank
you.  It was scary and I really didn't like it.  Please just make me sleepy next time."  He had
grinned at her and said that was OK, and he was proud she tried.  So...when we arrived here
and told her no sedation, Avalon was, understandably, miffed.  

The nurses assured her that a spinal MRI was much shorter than a brain one.  And we were
able to tell her what Margaret had said, get as much as we could, and if Avalon couldn't
tolerate it, give up.  Avalon liked hearing that, and promised she'd do her best to be brave.  

Then came the discussion of mommy going in with her.  I absolutely ABHOR the MRI bays.  The
second I walk into one, the migraine starts.  Not only do they hyper-activate my claustrophobia,
but the magnets set off my own pseudo-tumor (yes folks, I have it too - I'll explain some day),
and they cause a migraine that tends to last 2 to 3 days.  I have explained it Avalon time and
again, but honestly, what it's often come down to is me being terribly sneaky.  I go in with her
long enough to get her in the machine with the movie goggles on, then they sneak me back out
to the unit, only to sneak me back in when she's done.  I know it's wrong, but cripes, if I need to
be functioning human, it's the only way I can do it.  

Today I didn't want to be sneaky, I wanted to face it head on.  As soon as I broached the
subject, the tears started.  I don't blame her, so much of Avalon's world is far 'bigger' than a 6
year old should ever have to face.  We ask her to tolerate one scary thing after the other.  She
has endured more in 6 years than most of us will in a lifetime.  I really do know that, but here I
was asking for a 'pass' on something that scares the wits out of her.  I had to do it...so I had to
go for,
The Bribe.  

As you may have surmised by now, I am not exactly an easy touch.  First of all, money has
always been tight for us.  I don't have oodles of discretionary money to toss around, so I will
never be one of those buy-my-way-into-good-behavior moms.  I don't have the funds to back it
up.  But more important to this discussion, I also don't happen to be a
bribe-my-kid-for-cooperation mom.  Avalon's life has been one long medical adventure since
she was 17 months old.  She doesn't have the luxury of being a wimp or a non-compliant twit.  
She has to do what we need her to, in order to survive.  By keeping it matter-of-fact, she has
learned to forge ahead when lots of kids are shrieking and complaining.  Therefore, when she
is really, truly scared or in pain, we know to take her seriously.  The constant-whiners leave me
wondering when and how their parents ever know to truly worry.  If you cry and scream about
everything, when is anything important?

Anyway, back to
The Bribe.  As I already explained, MRIs are as excruciating for me as they are
scary for Avalon.  This would seem to bring us to an impasse.  That is, unless you are willing to
step outside your normal parameters and offer up bribe materials.  Oh yeah...Iim not only
willing, I did it in a heartbeat.  I'm talking, I didn't just 'step out' - I LEAPED into the bribe zone.  I
gave her free reign (within reason) to request at will.  After a bit of bartering (Avalon is no
slouch at this) we settled on a Bratz doll.  One Bratz doll bought me one pass for an MRI.  Fair
enough.  Don't get me wrong, little miss Trump tried to up the ante a 1001 ways, but we finally
concurred that one Bratz was sufficient payment for services not rendered.  Check,
check...Avalon was ready to go.  (and the nurses were greatly amused)

After Avalon went in the MRI room, I was chatting with some of the staff.  (who, by the way, had
recognized the fairy costume from last year!)  One of the nurses asked if she could get me
anything, a diet coke or a sprite?  I nearly fell off my chair as I squeaked out, "Yes!  Are you
serious?  Really?  YES, PLEASE!"  I don't think I've ever been so happy to see a tiny little
half-Diet-Coke in my life.  I hadn't had time to eat or drink that morning, so the caffeine monkey
was whacking my head something fierce, and I had become convinced that the sahara had
shrunk to just perfectly fit my mouth.  I stood up to go meet the nurse, and she simply directed
me to the little mini-fridge on the unit.  After thanking her profusely, I asked if this was new, or if
I should be retro-actively peeved that no one else has ever offered in the past 4 years?  
Several giggles later, I was assured this was relatively new.  I'm choosing to believe her,
otherwise I may have to go postal and whip me some MRI nurses for past discretions...

I continued to have fun, friendly discussions with the staff until Avalon came back out.  The
techs ranted and raved about how good she had done, and how proud of her they were.  They
called the neuro-surg NPs to come down and check Avalon's shunt, (the magnets reset it) and
they called transport to come retrieve Avalon.  Now, you and I know how the transport call went
- but it was humorous to hear them try.  Strike three for transport - she was once again
"un-transportable".  Too funny.  So, the nurse called the sainted Margaret to come down and
help me navigate back to clinic.  I should probably point out, the clinic tower is on the complete
OPPOSITE side of campus from the MRI unit.  'Coming down' is not quick or short, it's a haul.  

It didn't take long for Carrie to get there to check the shunt.  But before she could even get to
it, the radiologist came out and said he wanted more pictures, Avalon would have to go back in.
This led to yet another discussion of bribes.  Now, little miss brain-damaged may forget she
went somewhere or met someone last week, she may not know an l from a w...but by golly, she
has perfected the 'art of the deal'.  As soon as she heard "back in the machine" she was hot on
the trail of another Bratz doll.  As I acquiesced to the deal, I told the radiologist he ought to
have to pony up for the second one.  Heads up, radiologists have no sense of humor.  

Because they had immediately moved the next patient into the MRI machine, we had to wait for
the next available unit.  The radiologist popped back out long enough to say he'd tried to call
Margaret, but thought she was already on her way, please apologize for him.  Sure enough, a
minute later, she came strolling in, ready to play transport.  Carrie dropped the bomb of
needing more pics.  I'm telling you, the look she gave was priceless.  I mean, really...laugh out
loud funny.  Margaret is calm and supportive and well...steady, if that makes any sense.  She
heard that the trip had been for naught - and she just kind of temporarily
stopped.  I'm totally
not doing this justice, I really can't.  Suffice it to say, several of us had a really good giggle at
Margaret's expense.  The whole thing was just silly.

Carrie ran off to do more of her million and one to-do list, while Avalon and I waited for a
machine.  Soon enough, Avalon was back in, back out, and we were waiting on Carrie to come
back and re-set the shunt.  This time, the staff decided to be kind to poor Margaret and
Avalon's nurse and tech acted as transport and drove the gurney to clinic.  Good grief!  Those
women can haul butt!  I was nearly jogging to keep up with them.  It was funny to watch them try
to navigate the outpatient care center.  Normally they have no reason to be there, they really
were fish out of water.  Nice fish, but flopping around a bit.  

On the way out of MRI, Carrie and I had a few steps together where we could chat.  She
warned me that Dr. K would be on his boat this weekend, so I should try hard to keep from
being admitted.  With Dr. K gone, and Dr. Gronden gone, we would be left with Voldemort on
duty.  Good lord...what a horrifying thought.  Of course, Dr. K going to his boat also meant I
wouldn't get an answer today about the 'big surgery'.  It meant he would spend the weekend
pondering....  Great for well-thought out plans, frustrating for the wants-to-know-now mom.

After many, many thanks (from myself AND Margaret) the MRI folks were on their way 'home'.  
Avalon was firmly tucked into a way-too-small-for-a-gurney room, so we transferred her to the
bed and got rid of her temporary chariot.  The news of the day was simple, yes - Avalon has a
spinal leak, it was very obvious on the MRI.  The immediate plan was to send her home with
strict orders to lay flat until the following Tuesday, when she would come back in for more
testing.  She was allowed to get up long enough to go to the bathroom, but everything else,
including eating, was to be done lying down.  I was even asked about my car, making sure I
could get her home in a flat position.  Absolutely no activities over the weekend, just flat, flat,
and more flat.  OK, I could do that.  

As for the big picture, that was not as crystal clear.  First of all, the 3D CT scan had shown that
yes, the decompressions have grown over significantly.  So, the first order of business is to  
redo them.  When it comes to the 'Big Surgery' or Surgery #3...I knew better than to ask, but
curiosity (and a sense of humor) forced me to try anyway.  The short term problem is that
Avalon's ventricles are currently collapsed.  She has so little CSF and is currently so
dehydrated, the brain is a bit like a sponge that has been wrung out.  The brain is collapsed
around the shunt and catheters, making any real assessment impossible.  To try to 'plump' the
brain back up, Dr. Kosnik had Allison, one of the NPs, come in and partially close the valve on
Avalon's shunt.  We still don't think the stupid shunt works, but on the off chance it does
something, he closed it down to try to create a back pressure, to help fill up the brain again.  

When Dr. K laid out the plan to take Avalon home and keep her flat over the weekend, he also
said he was jetting off to his boat in a few hours.  He instructed me to call Carrie if I had any
concerns, and that
he would manage Avalon over the phone if she needed him.  (translation,
he'll take care of her, don't worry about Voldemort)  I took the opportunity to grill him a bit,
asking if he was taking Avalon 'with him' to think about things.  A big grin and affirmation later, I
mentally thanked Carrie for cluing me in as to how Dr. K works.  I appreciate knowing that he
often goes away to think about difficult cases.  I'll take a 'thinker' over a mindless automatron
any day.

Well, just sitting Avalon up in the wheelchair long enough to get to the car was a bad idea.  By
the time we got there, she was back to utterly miserable.  I yanked Avalon's car seat out, and
she was able to lay across the back seat of the van to get home.  We carried her in the house,
and laid her on the couch, thinking she'd basically spend the next 5 days there.  Since Anam's
birthday party is Saturday, I even went downstairs and brought up our folding bed, so she
could lay on it for the party.  As it turns out, nothing was comfortable.  It didn't take long before
she was complaining bitterly about her back.  You see, the CSF leak wasn't coming OUT of her
body.  The CSF was leaking into the muscles in her back, causing great back pain from the
pressure.  No matter how we positioned her on the couch or the cot, they were both too
squishy.  The gurney had been rock hard, and flat on the gurney was not the same as flat on
the couch.  It didn't take long before we knew we were in trouble.  

The final straw was after she got up once to go potty.  We helped her to and from the bathroom
to make sure she didn't fall.  As she got back to the couch, she grabbed her chest and started
crying about extreme chest pain.  I'm sorry, but chest pain just isn't right in a 6 year old.  I
immediately called Carrie and told her what was happening.  Carrie got off the phone with me,
and called Dr. Kosnik.  Sure enough, she called back with what I kind of expected, "Come in".  
While I always fool myself into thinking I'm wrong, I've never been surprised when someone
wants us admitted.  Moms have a sixth sense about when we need to be in the hospital, it's just
we do our best to sit on that little sense, and gag it whenever possible.  I knew chest pains
meant we needed help, but dang it if I didn't try to avoid it.  

So, about an hour after we got home, I was frantically packing and making phone calls, trying to
let everyone know what was happening.  Thankfully, Carrie was still on duty, so we were able to
be direct admitted, rather than having to go the ER route.  That went a long way toward
preserving my sanity.

Once at the hospital, the trip in from the car was awful for Avalon.  We got to admitting and
were lucky that no one was ahead of us.  We were also lucky we got the nice receptionist,
instead of the grouchy buttpaste guy we've had in the past, who was, indeed, sitting in his
cubicle from hell.  (can you tell I dislike him rather immensely?)  I'm usually pretty patient for
any of the registration processes, but every minute that ticked by, made Avalon that much
more miserable.  I eventually warned the girl that it was in her best interest to hurry, her time
was limited if she wanted to keep her carpet clean.  One look at Avalon, and she was wise
enough to heed my warning.  

A few minutes later we were upstairs, and my pathetic little one was flat once again.  Carrie and
Dr. Esmerelda (resident) were in the room instantly.  Since Dr. K felt the chest pains were from
dehydration messing with Avalon's heart, the first order of business  was to get an IV going.  
With Avalon, that's an automatic call to the IV team.  To say Avalon is a "bad stick" is the
understatement of the modern century.  The poor kid has the most awful veins you can
imagine.  Add the fact that she was dehydrated, and I knew it would be rough.  Sure enough, it
was a rough start, but Suzy from the IV team made them proud, she got Avalon on the second
stick, nearly a record.  However, from the time the IV went in, it was unbelievably painful.  We
had trouble drawing from it too, leading the nurse to call Suzy back to check it.  We all agreed it
wasn't ideal, but given her history, we'd go with it for now.  Avalon was in so much pain the IV
was kind of added insult to injury, I really felt awful for her.  

Here is where my 'appreciation' (read that as really, REALLY sarcastic) of residents comes into
play.  The oh-so-friggin'-kind-and-brilliant Dr. E. decided she wanted Avalon to be "narcotic
free" tonight, so she could "watch what happens".  Uh huh...  May Dr. E someday be whacked
upside the head with a bat, so she knows the torture she sanctioned.  I have learned a pretty
healthy dislike of most residents.  If you read that I praise one, take it to heart - they earned it.  

As with our other stays, our T3 nurse tonight is amazing.  We've never had her before, but she
is as wonderful as what we've come to expect.  It's nice to know Avalon is in good hands again,
even if the resident is being a turd.

Good night!
Avalon doing the 3D CT scan.  Yes, that is a gold fairy costume under the lead.  
Digital x-ray, doing a "shunt series"
In her bay in MRI, waiting her turn.  See the smile?  That would be because she's feeling
better, she'd been flat for several hours at this point, pressure was stabilizing.