Avalon's Army of Angels
July 31, 2008
PICU to 3 Tower Unit
Oooohhh...this day did not dawn well.  OK, truth be
told...yesterday simply continued into today...there
was no real delineation.  

As the saying goes,  "Let's start at the very
beginning...a very fine place to start..."  As I told
you yesterday, I was looking forward to a slightly
less mangled evening of rest.  With the
newly-pilfered recliner, I had high hopes of actually
catching at least a couple of dozen ZZZ's.  I
believe it took less than twelve blinks to realize
how far from reality those hopes actually were.

First of all, the recliner was possessed.  There was
obviously a wicked little sprite living within its vinyl
walls.  Said sprite garnered endless amusement in
attempting to launch me out of its happy home.  

First of all, the recliner had wheels.  I
ever-so-erroneously thought those wheels were
handy as I moved the chair into our holding pen.  
The reality became clear the first time I tried to
lean back and prop my feet onto Avalon's bed.  It
went something like:  recline...prop....
Swooosh!  As
I shot across the room like an oversized jockey on
a vinyl steed.  

Oh, and I'm sure you're wondering why I had to
"prop" my feet, when I was sitting in a recliner?  
Well, that's another dimension of the sprite's evil
plan.  If you attempted to actually
recline the chair
- while using the footstool for the assumed
purpose...then the chair would suddenly lurch
backwards - in a rather conspicuous attempt to
thrust you out on your head.  And Heaven forbid
you attempt to adjust your body position while in
any type of a reclined posture.  That absolutely
click, whirrrr, screeeee, whomp!  and
you would find your feet dangerously poised over
your head...as you plummeted to your doom.  

The final chair saga came close to the
Snoopy/chair attack scene from Charlie Brown's
Thanksgiving.  The man-eating chair and its
deranged resident sprite required nearly
Herculean efforts to keep in any type of a reclined
position.  I tucked, tensed, and toe-grappled just to
maintain some semblence of a sleep posture.  
Under the best of circumstances...this would have
been challenging.  Last night, the concept of rest,
was downright laughable.  

Sleep in PICU comes in horrifically short bursts.  I  
don't know how anyone ever recuperates there.  
The nursing schedule is so intense, they're
monitoring the patients once to twice an hour.  The
BP cuff automatically goes off every half hour, the
neurology checks (asking questions, pupil dilation,
strength tests, etc) go from once an hour to maybe
every 90 minutes if they're feeling generous, and
temperature checks are at least once an hour.  
Then there is the inevitable antibiotic infusions and
line flushes.  Those are always good for a sound
panic attack, as the pump finishes the infusion and
sounds off with an alarm roughly equivalent to an
ambulance on steroids.  

As if all of those aren't enough, Avalon insisted on
setting off the Blood Pressure and Heart Rate
monitors all night.  I wish to Betsy, Bob, and
Telulah I was exaggerating, but I'm not.  Starting
about midnight, Avalon set off the BP alarms
nearly every half hour, because of a low BP.  On
the rare half hour that her BP was marginally OK,
she'd set off the HR alarms.  

Yes, we were in PICU, where kids are usually
staffed one on one, or two  on one.  But lo and
behold, Avalon was a LOW priority patient.  Not
that we didn't love that (I will
always prefer low
priority in PICU to HIGH priority), but it meant
Avalon wasn't really on "the radar screen" so to
speak.  PICU nurses are used to hearing BP and
HR alarms.  They probably hear the things in their
sleep.  Therefore, they are entirely capable of
hearing them...for minutes at a time.  Eventually, a
nurse would notice she was alarming, fire off the
cuff again (causing
another alarm) to make sure
the reading was correct, and then note the
numbers in her chart.  This went on....
alllllll night.....

By morning, I was a crazed fruit loop.  A) I'd had
only the 3 hours of sleep the night before surgery,  
B) the stress of surgery, and C) the Night of the
Living BeeeeeeeeeeeP.  I was slightly bonzo.

It was in this bonzo state that I began grilling ICU
doctors as to what was going on with Avalon's BP.  
Mind you, this was still crack-of-dawn - and Avalon
was still peacefully sleeping.  The nurses seemed
worried about the BP's too, but the doctors kept
saying things like, "You don't know what her BP
does at home when she sleeps..she just happens
to be on a monitor here."  or "She's just in a really
deep, post-op sleep - I won't worry until she's
doing this awake."  or my favorite and
what-nearly-got-a-resident-whacked, "Oh, you
don't have monitors at home.  Moms always come
to the hospital and freak out over nothing."  That
man is lucky he can still walk upright.  

As the morning progressed, so did my arguments
with people.  I consistently reminded them of just
how much hospital/monitoring time we've done.  
We've NEVER seen BP's like this, not once, not in
4 years.  I was losing my patience.  

About then, it was time for rounds.  Rounds in
PICU resemble gang warfare.  A wad of humans, a
dozen or so, traipse around the unit - discussing
each child like a notation in a book.  They don't
talk to the parents, they just talk about the child.  
Heck, they don't even hardly use names, the
children are a diagnosis.  Its impersonal, impolite,  
and downright impugnable!   I
despise the nature
of the entire event.  After all, while these children
are complicated and often in precarious
states...they are still someone's child.  And, with
the status the children are currently in...the
parents need the most support ever - not to be
treated like a side show act.   Ooooooh, I am
seriously not a fan of PICU rounds - can you tell?

So here it is, our turn.  And by the way, these
torturous stare-fests are even worse in the curtain
farm than they are in the hamster cages.  (I called
the last ICU room a hamster cage - it had a glass
front wall, that made it look like an aquarium)  We
were in the curtain farm this time, where there are
no walls.  (see pictures at right)  They're not
"rooms", they are merely hunks of space
separated by curtains.  The wad o' spectators
really makes it feel like a circus.  Grrrrr.....

Back to the gazing gabfest.  Whichever schmucko
doctor it was leading the tour, stopped in front of
us and gave the speech about her being here for
post-op watch.  He explained that anytime the
skull/brain barrier is compromised - kids are
preferably sent to ICU for a 24 hour watch.  He
gave no background about Avalon's medical
history - but said what the operation had
been...and went on to say it was such an "old"
procedure  they didn't even teach it in medical
school anymore!  He said he'd had to go on the
internet to look it up, and couldn't believe it was
being done.  He said all of this,
right in front of

Yes, being the quiet, reserved woman I am - I
merely let it go...
NOT.  I began signaling to Dr.
Schmuck...waving him in.  Oh the looks of horror
from the galley....  I went on to describe to Dr.
Schmuck exactly what Avalon's history was and
why we did this operation, and how much we
appreciated the neuro-surgeon for being
experienced enough to offer her an option others
couldn't.  I also said he might want to do the rest of
his homework the next time before he smarts off in
front of a mother.  I was not a popular curtain.  

I do have to give a
gigantic  shout out to our nurse
from Day one - Christina.  God Bless that
kind-hearted woman...she brought me coffee.  In
addition to floating to various departments in the
hospital, she also does discharge planning for
PICU patients.  While we had her as our nurse on
Day one, today, Day 2, she was working as a
discharge planner.  She stopped by bright and
early, just as promised.  In fact, she was tickled
pink when Avalon informed her that her new bear
looked just like Christina.  (same hair, you know)  
She was even kind enough to pose for a picture,
since we'd never managed to capture her during
previous hospitalizations.  

But the best part of her visit?!  Christina has the
same giant brain-bashing monkey on her back that
I do!!  She grinned at me and said, "Would you like
a cup of coffee?"  I nearly fell at her feet.  I asked
her if the monkey was that obvious - as he had
reached gorilla proportions and was bashing me
quite soundly at the moment.  She said, "No, I just
remember you!"  Talk about your unexpected hug.
 Not sure if I should have been touched by her
thoughtful gesture, or embarrassed that so many
staff know about my caffeine addiction.  I decided
to celebrate what is obviously an iron-clad memory
in a brilliant nurse...  That's my story and I'm
sticking to it.  

The other saving grace of the day was our nurse,
Cathie.  Cathie and I immediately recognized each
other, and it didn't take long before we'd stitched
together our history.  Cathie has been at the
hospital over 20 years.  She's a float nurse and
works on all the units.  She's also a
nurse, who is more than capable of working on all
the units.  Heme-Onc, PICU, and NICU are very
picky about floats, and she's welcomed with open,
appreciative arms in all 3 units.  We know Cathie
from J-5 (the Heme-Onc unit) and we've had her
on other units as well.  She's one of those warm,
cheerful, really personable people that has friends
in all corners of the world.  She might not always
follow the exact rules of the road - but she will
ALWAYS have the patient's best interest at heart,
and is a nurse that others should aspire to.  

Cathie kept me laughing, and kept me sane with
the BP stuff.  She watched Avalon like a hawk.  
She also encouraged Avalon, teased Avalon, and
cajoled her into going potty, or tolerating painful IV
meds - no forcing with Cathie.  She gets
everything accomplished faster than the others,
because she does it with a "spoonful of sugar".  
Again, I wish I could clone her.  

Cathie was so tickled with Avalon's progress in the
afternoon, she even broke PICU rules and offered
to take Avalon on a short, nurse-chaperoned fishy
hunt.  Every person we met in the halls grinned at
Cathie and had something personal to say to her,
like the entire staff is a close friend.  She's really a
special one.  She even managed to get Avalon to
agree to eat a popsicle during the walk, and
popped into the ID unit on the 6th floor to swipe
one from their kitchen.  It was a short walk, but I'm
thoroughly convinced it helped immensely with her
poo problem recovery.  Go Cathie!

The rest of the PICU day had lots of high points
too.  Our surgery center friends visited, bearing
gifts and posters.  Nurse Suzi brought a Hannah
Montana T-shirt with
fabulous sparkly scarf, that is
the perfect cover-your-incisions size.  She also
brought the cutest banners you've ever seen, from
her sister's pre-school.  In later entries, you can
see the banners on the door of Avalon's room.  

We also had our first-ever play visit from child life.  
Avalon LOVED it!  The Child Life worker had
Avalon use a tiny wand to burst bubbles she blew.  
Then, she brought in a Lite Brite, and they made
shapes and lines, and counted the pegs.  Avalon
told her, "You're so
Fun!"  Pretty much the highest
praise possible from a 5 year old.  Of course,
lovely as she was, the Child Life lady did the same
thing the previous ones we've met have.  She
made a promise  she didn't keep.  Cripes, I wish I
could sit them all down and collectlively smack
them.  Avalon has honestly never played with one
before, because our only experiences were them
poking their heads into our room, telling her they'd
be right back to play - then not showing up.  This
time, she played, but then asked if Avalon would
like to meet the muscial therapist.  (BTW - 4 years
at this hospital - never even knew we had one!)  
Avalon was very excited - and the Child Life worker
said she'd do her best to have her come to the
floor.  Gee...can you guess who didn't come, and
can you also guess who obsessed about it?  
Again, Grrrrrr.......

And speaking of obsessing and
not-doing-what's-promised - I have to vent a wee
bit here.  Our hospital has a program that a child is
supposed to get a small toy whenever they've
been admitted to the hospital.  The toy cart is
legendary to frequent flyers like Avalon.  She
knows darn good and well she's supposed to get
to pick something.  Now, she needs the little
cheapie toys like she needs a hole in  her
head....wait, HA HA!  i CRACK ME UP!!!  I don't
think I can use that expression anymore when
talking about Avalon...she really does have new
holes in her head!!  HA HA!!!!  

OK, back to my gripe.  Needed or not - the little
bugger knows the toy cart is supposed to come
around.  Well, this operation concluded a perfect
three-peat.  She never saw the toy cart this
summer, not once - not after any of her brain
surgeries.  How stinky is that?  Sure, I could have
called the volunteer office and complained, but
what kind of a horse's patoot would I have looked
like then?  "Umm, excuse me.  My daughter didn't
get a chance to pick out the $2 toy she's
supposed to..."  Seriously, I've done it on a
previous admission - and I was made to feel like a
greedy wench.  It has absolutely zero to do with
me, its the little person they're short-changing.  It
gripes my over-sized butt.  Either have the
program, or don't.  But please...stop half-way
doing it, my daughter doesn't need any reason to
have hurt feelings, the rest of her hurts enough.  

OK, fully vented...moving on....

OOps, not fully vented...just lied to you.  I haven't
covered the "best" (read heavy, dripping sarcasm)
conversation of the day yet.  Avalon and I were
peacefully sitting watching TV and chatting...when
Beee-eeep, Beee-eep....her BP alarm went off
again.  OK, I'd now been told by damn near
everyone -
Don't worry about the BP's, she's just
in a deep sleep after surgery.  You're worrying
over nothing, she's sleeping...blah blah blah...

And yet, here she was, wide awake and sitting up -
with a blood pressure of 70/30!!  This was NOT a
happy mamma.  The nurse (Cathie was busy
elsewhere) repeated the reading, and it came
back 73/30...no better.  I demanded to see the
doctor.  Lo and behold, it was Dr. Schmucko who
came in...you know, the one who I'd already called
out once today?  Well, he was foolish enough to
plaster that oh-this-mom-worries-over-everything
look on his face and started trying to pacify me.  
He trotted out the same excuses as before.  I
ever-so-politely-still reminded him of his own
words, "I won't be worried unless this happens
when she's awake."  I pointed out, in case he
missed it, that she was, indeed awake and sitting
up.  So...what was he going to do now?

Dr. Schmucko obviously has little regard for his
own life.  He told me that Avalon looked just fine
and that I don't know what her pressures are
normally, because I don't monitor her at home.  
Yes, that's when the vein blew in my forehead....  
As I began mentally making a list of things I should
do before I got carted off to jail for smacking him...I
did have the peace of mind to warn him that I was
about to become a "Giant Thorn in his Arse" if he
didn't stop talking and start listening.  I told him he
was far too busy listening to himself, and might
want to pay attention to the MOM, you know, the
one who has watched Dyna-maps (BP machines)
and monitors for
4 years!  The MOM who knew
something was wrong - and to whom services and
doctors far greater than him have learned to
trust?!  Count this as GRRRRRRR  number 3, and
the largest.

In the middle of our "discussion", our transfer
orders came through.  I was more than happy to
table our useless dialogue.  I knew the nurse
practitioners on T-3 would not only care about the
issue - they'd help me solve it.  I'm pretty sure Dr.
Schmucko probably went back to the corral and
did a voodoo dance in my honor as we left the unit.

Once on T-3, nurse Cathie and I described what
had been going on to the nurse practitioner,
Kristie.  Considering that PICU had, once again,
discontinued Avalon's fluids just hours after
surgery, we all agreed that Avalon was probably
just dehydrated.  Kristie ordered a 360 cc bolus (a
bolus is a large quantity of fluid run through an IV
in a short amount of time) and a good drip for the
next few days after that.  Within two hours,
Avalon's BP was right back to where we expect it.  
Hmmmm...funny how a nurse practitioner who
actually listens, can trump a doctor any day.  Foo
on him.  

Kristie did more than just solve the BP issue
though.  She had been with us for the previous two
surgeries and the "all-stop" orders the anesthesia
had issued to Avalon's gut.  This time, Kristie
decided to be a bit more pro-active.  In addition to
the high drip rate (lots of IV fluids going in), she
asked what I thought about giving Avalon the high
dose of Mirilax (stool softener) that the GI docs
had eventually worked up to.  In other words,
rather than slowly increasing Avalon's dose over
the next several days, why not try a
super-whammy right up front?  Knowing Mirilax
really can't hurt anything, I thought it was worth a

I hereby go on record as thinking Kristie is as
brilliant as she is cute!  Lots of fluids, lots of
Mirilax....and viola!  We achieved poop!  OK, this
may not seem miraculous to most of you, but
having been kept prisoner over a no-poo issue for
the last two surgeries...this was time for naked
dancing in the streets to us.  Wahooo Kristie the
Wonder NP!!  We salute you!!

The rest of the evening on 3Tower was full of visits
and smiles.  Marnita, Jeannie, and cutie-pie Lucy
came for a visit.  The picture of Lucy next to
Avalon is pretty typical post-surgery behavior for
Avalon - she zones out and watches TV.  She's
really not terribly good company.  I don't blame
her, its her way of letting us know how miserable
she is.  Its why I always warn people about
visiting~we are thrilled to see you, but don't expect
Avalon to give two hoots.

The pink-haired pompadour is my father, Avalon's
Pappo.  He donned this ridiculous flamin' flamingo
color in honor of our family's new Pippi
Longstocking dos.  Avalon thought he was superb.
 I'm reasonably sure the nurses thought he was
nuts.  I will sign up for so-smitten-with
his-grandkids, he's abandoned all reason.....

Pappo came with Daddy, Ambrosia, and Anam,
and they all came with a truckload of cards!  While
we had managed to coerce Avalon into opening a
few small packages and cards in PICU, she really
hadn't felt up to it very much.  We decided she
needed to "feel" the love people were sending...so
we buried her with mail!  I truly believe the
resulting pictures did as much for our mental
health as the pile did for her spirits.  Can cards
make pain go away?  Nope, morphine's pretty
good at that.  But love and hope in the form of
random envelopes of smiles and hugs from far
away friends, can do a lot to brighten any day.  

It looks like my simple request for a few cards from
our local friends, may be on its way to getting
completely out of control!  What fun!  I hope all
these senders will forgive the time its going to take
us to open them all.....

And thankfully, after lots of fluids, lots of morphine,
and boatloads upon boatloads of LOVE...little Miss
Avalon not only napped peacefully throughout the
day...her heart rate and blood pressure settled
into beautiful rhythms and lovely numbers.  All of
which helped mommy sleep a little better.  

(even if it was on one of the Chinese torture
devices they call pull-out beds...)  
Pappo the Pink
Avalon and Lucy - with Avalon in
her typical zoned out "place"
Writing with pens and a princess
notebook she received in an owie
package.  Yep, she's drugged....
Nurse Cathie - We love her!
Sarah from Surgery Center
Tina from surgery center - she
prayed for poop!  
The Surgery Center "gang" - oh
how much we adore them!
Popsicles and narcotics...a great
Suzi and the sparkly scarf.  
Welcome to the curtain farm...
She tried the sausage, but it hurt
her jaw.  Two bites of pancake
later, she was done.
Thank You Child Life!  
Nurse Christina and the bear
Avalon named after her - because
they have the same hair!
Just a few cards......  ;-)
Hee hee hee....