Our
Journey:
Avalon's Army of Angels
October 13, 2009
Happy Birthday Anam?  LP of doom
Technically speaking, today is Anam's birthday.  Shhhh...we're not telling him yet!  It's horrible, I
know.  I feel like a giant walking heel.  But, with all of the craziness of the past few weeks, I
haven't exactly had time (or honestly, the mental capacity) to shop and plan a birthday.  
Anam's big party is Saturday, so I still have a few days to get it together.  So, when Pappo
came to watch the kids today, we all decided it was better to pretend it's not Anam's birthday
today, and just talk about the soon-to-be birthday bash.

Why did Pappo come?  Because Avalon has a looooong hospital day today.  We're starting in
Heme-Onc for blood work and physical exam, then on to Surgery Center for an LP, then
finishing as an add-on in Neuro-surgery clinic.  Should be close to banker's hours, 8-5.  I'll
report back.


OK, today wasn't just long...it was certifiably AWFUL.  Tears, lots of tears...and I'm sure many,
many more to come...

The day started off just fine.  We had to be at Heme-Onc at 8:00 a.m..  As with any visit, we
checked in, were eventually called to the vitals room, and some time later made it back to an
exam room.  Today's vitals/blood draw were a bit wonky, Ryan was busy with patients on timed
blood studies, so Avalon's finger stick was delayed quite a bit.  In the meantime, Avalon had fun
playing with other kids, and I had a chance to get caught up with some of our favorite nurses.  
As odd as it sounds, going to Heme-Onc clinic is enjoyable for us.  We have come to dearly
love these people over the past 5 years.  They've seen us through our worst and our best
times.  They've cried with me through bad news, cheered with us for good news, and cuddled
our newborn like he was their own.  You can't help but feel like you're among family when
you're there.

I should interject here that Avalon arrived at clinic in typical Avalon fashion...with
style.  I think
that saving Halloween costumes for only Trick or Treat is dorky.  C'mon, kids love to dress up!  
So, I use the entire month of October as an excuse to allow my kids to be adorable in public.  
Avalon had her choice of half of dozen outfits to flounce around in today.  Not surprising, she
picked her new Trick or Treat one, a beautiful black and purple witch number.  She's so proud
of it, she could pop.  She even brought her sparkly purple and silver metallic broom today.  
After all, what's a witch without a broom?  I have to admit though, supermom's cape was a tad
tarnished today.  My gorgeous little witch was forced to ride around in an out-of-season chariot.
 I haven't gotten around to changing her wheelchair decorations yet.  It's still decked out with
glittering butterflies and huge flowers.  Oops.

As a glittering witch, Avalon was ripe for lots of ooohs and aaahs in clinic.  Heck, I'd have never
heard the end of it if I brought her in street clothes!  Like I said, we've been at this for 5 years,
they know how nutty I am about the Eve of the Hallows.  They expect nothing less than odd
from us.  Glad to consistently be of service.  ;-)

A few hours later, we were finally in the exam room talking with our beloved NP, Diane.  I was a
horrible, terrible, AWFUL mother this summer, and allowed Avalon to skip a regular Heme-Onc
follow up.  Translation, we had 6 months of medical (and life!) stuff to catch Diane up on.  The
good news is, Avalon's blood values were beautiful.  From the cancer perspective, she's
perfect.  I'll take that and grin endlessly about it!  Avalon's physical exam went well also.  
Avalon did report to Diane the same things we already knew, indicators of high pressure.  We
were also able to explain to Diane Avalon's migraines and the genetic disorder that Dr.
Spencer had discovered.  (Ehlers-Danlos)  I'm telling you, it's a shame Diane isn't a
Rheumatologist.  I know she is in the exact perfect place she was meant to be...but she's
brilliant!  It took a hot second for Diane to figure out all the things we have over the past few
months about the Ehlers-Danlos.  It explains why Avalon never had the tendon tightening from
Vincristine, why Anam's club foot pretty much fixed itself, and why Aurora was always in so
much pain from swimming.  I'm telling you, Diane is as smart as they come.

After Heme-Onc, we had to hot-foot it down to the Surgery Center.  We were more than a little
late, having been held up in clinic because of the whole finger stick fiasco.  The good news is
the surgery center is used to Heme-Onc kids, they know we're never on time!

Our visit started out great.  We were greeted with giant hugs and smooches from our favorite
two clerks in the entire world, Tina and Sarah.  There is no such thing as a bad mood with
these ladies around!  I will never be able to say enough nice words to fully describe them.  
Long story short, they love Avalon and they both have hearts of pure, selfless GOLD.  I adore
them.  We were so busy getting caught up on life stuff, we were making the intake nurses for
the unit batty.  They finally came out and 'threatened' (with big grins) bodily harm if we didn't
hush up and get back there!  

Once we made it to pre-op, we were, again, greeted with big hugs and lots of smiles.  Avalon
has been through this unit dozens upon dozens of times.  They've watched her grow up over
the past 5 years.  They are as much a part of her world as anyone.  It's funny, I hear other
parents stress about their child "going under" and all the horrible things they worry about.  
Sure, general anesthesia does carry it's inherent potential for issues.  The thing is, this unit
has erased such a significant amount of that fear for us, we have come to totally take it all for
granted.  The nurses were complimenting Avalon on her gorgeous witch costume.  They were
thrilled to accept the height and weight info we'd just gotten in Heme-Onc, and they were happy
to pester us about what we've been up to since we haven't been there in a while.  Heck, while I
chatted with the new oncologist, Avalon put herself in the exam room and changed into the
hospital pajamas.  All in all, you'd have thought we were at a friend's house, not in a surgery
unit.

The new oncologist was very sweet.  Poor thing, I felt a bit like I was throwing her under the
bus.  She came to chat with me in the middle of 'old home week' of the nurses talking with
Avalon, and Avalon putting herself in her pjs.  It was pretty obvious we're old hats at this.  As I
discussed with Dr. R, about double checking with other oncs how they normally position Avalon
for a pressure LP (position matters - we want to be sure to compare apples to apples)
something dawned on me.  The fact is, the anesthesiologist has been in there for more of the
taps than any single onc.  I told Dr. R. to just check with Dr. Fedel, after all - she was probably
more of an expert than them at this point!

I also had the dubious task of 'cliff-noting' Avalon's medical history for poor Dr. R.  Can you
imagine?  I mean, it's significantly easier to cliff note it for an oncologist than a layman or even
a regular pediatrician...but it's still daunting.  I can breeze through it so easily, I often forget the
impact of what I'm telling someone.  It's why I carry pictures of Avalon's MRI with me at all times.  
Face it, a picture is worth a thousand words.  I can tell you what was done to her...but it's just a
mother's ranting, until they see the proof with their own eyes.  And truthfully, the whole picture
is so bizzare, it's hard to believe it myself sometimes.  I always find it a tad amusing when I'm
breaking in a new doc.  :-)  

From vitals, we headed over to Avalon's bed.  We didn't even have time to make it through one
book before they came to get her.  With Dr. Fedel doing the anesthesia, there isn't much need
for a consult/explanation.  I signed the forms as soon as we walked in.  Dr. F. knows Avalon
darn near better than I do.  I'm her number one fan, and trust her implicitly with my little
princess.  I know beyond a shadow of a doubt that Avalon is safe in her care, whether it's
Avalon's 26th, or 126th general anesth...Dr. F will bring her back to me safely.

While they were off doing the medical thing, I headed out to the waiting area.  I barely had time
to text a few people, and a rather rattled Dr. R made her appearance.  From her look, I knew it
wasn't good - but wow...I really wasn't ready for what she had to say.  Before surgery, I had told
Dr. R I wasn't sure what to expect.  I had told her what I was looking for was a pressure low
enough we'd be able to wait for surgery until after Halloween, so Avalon could enjoy herself.   
From the neuro-ophthal report, we presumed pressure to be in the 20's.  (remember, normal is
8-12)  However, it's difficult for me to tell now.  Symptoms creep on...and Avalon is good at
hiding them.  I felt the decompressions right before they wheeled her back to OR, and the
stupid things still felt soft to me, so I truly had no idea.  Heck, Avalon had behaved so 'together'
and friendly that morning, I'd managed to convince myself that there was a possibility Dr. R
might come out and tell me her pressure was fine and I was a paranoid loon.  Oh was I wrong.

The reality is, Avalon's pressure was 31.  Yes, you read that right...
31!  Poor Dr. R, she looked
as upset as I know I did.  I did my best to not cry, but I'm afraid the tears at least made it to my
eyes.  And honestly, I can say I did feel weak in the knees.  Dr. R apologized, and said she just
couldn't believe it.  Of course it's not her
fault, but she also knew what that number meant, and
we all know it's nothing good.  Damn.  No putting off surgery now - Avalon is in trouble.  

I thanked Dr. R and tried to get myself together long enough to make a few phone calls and
send a few texts.  31 is definitely a number that means life is going to stink out loud for a
while...and that we are going to have to face the Big Ugly that we've all been hoping to avoid.  
Damn...really doesn't begin to cover it.  

Soon enough, they were out to call me back to recovery for my little one.  I was met at the bed
by Dr. Fedel and Suzy, our favorite recovery nurse.  Suzy is like Sarah and Tina...she's
family.  
(So is Dr. Fedel)  Dr. F went on to tell me that she and Dr. R had such a hard time believing
that awful number, that they had turned the stopcock on the manometer, and measured the
pressure a second time, just to make sure it wasn't a bubble artificially inflating the pressure.  
No...it really, truly was that bad.  I'm thankful that Dr. Fedel thought to do that, and even more
grateful she shared the info...it weighed heavily when I reported everything to Dr. Kosnik.

Dr. F. also said she'd double whammied Avalon with her usual morphine chaser.  When you
remove excess spinal fluid, the brain has a period of expansion post LP.  The expansion is
EXCRUCIATING.  We learned a long time ago to give Avalon a morphine chaser as they take
her off the anesthesia.  The morphine bridges the gap after anesthesia as the brain plumps
back up.  Since they removed enough fluid to take Avalon's opening pressure of 31 down to a
closing pressure of 17 (nearly half ) - Dr. F knew Avalon would be in agony.  Yay for fabulous
doctors!

Typically, Avalon comes out of anesthesia very friendly, and absolutely starving.  She has even
taking to calling Suzy 'Popsicle Suzy' because Suzy usually has several frozen sticks waiting on
her.  Today, Suzy had a new surprise, a slushie.  Oddly though, we nearly had to force the
slushie in.  Unlike most times, Avalon just didn't seem terribly interested.  We presume it was
the double dose of morphine, she was loopier than normal.  

Thank you morphine, Avalon was also much sleepier than normal.  We ended up having to
pester her quite a bit to eventually get her moving.  If we hadn't also had an appt in
neurosurgery we would have let her sleep it off.  But, with a number like 31, we knew we
needed to get in to see Dr. K, no choice.

After lots of giggles, and many, many hugs with our beloved Surgery Center staff, Avalon and I
finally headed down to the cafeteria to get food to take to Kosnik's office, to eat while we
waited.  Before we left though, one of the nurses had to hassle me.  She asked where Avalon's
spiders were....I was behind on my wheelchair decorating!  You know you've been around too
long, when they remember what your chair is supposed to look like for each season...

Here's where the day got interesting.  Like I said before, Avalon usually handles GA like a
champ.  She normally sits up and demands a burger.  No hesitation, no upset tummy ever.  In
fact, after her first decompression surgery last year, Nick and I entered PICU to hear her loudly
arguing with the attending that she NEEDED spaghetti!  Why on earth wouldn't he give it to
her?!  He was in hysterics as he introduced himself to us, and reported she'd been griping
about food ever since she got there.  So...when we arrived in the cafeteria and Avalon was
unsure of what food she wanted, I thought it was strange.  Thankfully, the cook accidentally
double boxed Avalon's food, because about 2 minutes after we arrived at the table...the entire
slushy came pouring back out.  Poor kiddo, here she wanted to eat, and all she could do was
puke the extra box and tray full.  (I would vote us down as lunch companions.)  Trooper that
she is though, she requested to keep her food and take it with us.  To be thoughtful of other
cafeteria goers...we beat a hasty retreat upstairs to sit shiva in the hallway outside of Dr. K's
office.  We both agreed a hallway and an emesis basin were nicer to our fellow man than the
cafeteria and a tray.  I'm just sayin'...

As soon as we got upstairs, I retrieved an emesis basin and we began the wait.  Avalon did eat
a bite or two, but she just wasn't her normal post-op self.  She was really exhausted and ended
up snoozing away most of the wait.  She couldn't have been remotely comfortable, she slept
sitting up in her wheelchair - not a terribly relaxing position.  

Eventually, we got our turn, and this is what we learned.  Yes, Avalon needs surgery.  No, we
can't wait until November, she is definitely in trouble.  We'll be coming back on Thursday for a
3D CT scan.  Dr. Kosnik says that because of her age, it's possible the decompressions have
grown over quite a bit.  If they have, step one will be to redo the decompressions.  After they
are redone, then we will decide what we want to do next.  (as in, how do we handle the shunt
that Dr. K hasn't wanted to touch...)  So, there is at least one surgery in Avalon's future, and
possibly 3.  Worst of all, is what the Big Surgery may bring.  We all know the possibilities, and
no one is happy about it.  

As with last Summer, I have 100% confidence in Dr. Kosnik.  In fact, I'm actually glad this
happened now, while he's still here and not retired.  If anyone can remove the new shunt with a
minimum of damage, it's him.  I feel that in my soul.  It's him, he
has to be the one.  He will do
the least harm of anyone alive.  Besides, if damage does happen, we can live with the
knowledge that it happened
in spite of amazing skill and best efforts.  I can deal with that.  I
don't ever again want to face damage knowing it was because of someone's ineptitude.  I have
no rose-colored glasses here, but I am fully confident that Dr. K is Avalon's best chance.  

The rest of the night has been rough.  Avalon has a headache and a backache.  It's been a
long time since she's had an LP, I think it really kind of caught up to her.  Then again, she slept
sitting up in a wheelchair for 2 hours, my back would be twisted into knots too.  

I'll let you know what I learn Thursday.  For tonight, I have to go cry....panic about the reality of
all of this is starting to set in.  Fair warning....I don't think I'm going to handle this well.  
Getting vitals in Heme-Onc clinic.  Weight, height, temperature, blood pressure, heart rate.
Pre-op area in the Surgery Center.  All smiles because the staff make her happy!
Ready for her finger stick in Heme-Onc.  Look above Avalon's head...the baldy little girl is her!  
Every time I see that they still have that card...it makes my heart sing.  Love you my Heme-Onc family!
Pre Op                                                                              Post Op
Popsicle Suzy!
Being cute as we leave S.C.
It's misery when your brain is expanding
Cute didn't last long...  She vomited in the cafeteria, then slept like this in the
hallway outside of neurosugery for nearly 2 hours.  :*(