Avalon's Army of Angels
|July 30, 2008 Part C
Surgery and PICU
Ahhh...the joys of surgery day. If you haven't
figured it out by now, surgery day fun doesn't start
the morning of the procedure, it starts somewhere
the night before.
Tuesday night, I was exhausted. Since I had a lot
of the house clean and lots of pre-op stuff
accomplished, I decided to go ahead and sleep for
several hours, just get myself up nice and early to
get packed and loaded. Besides, with an 8:30
arrival time, life was already supposed to be better
than the last 5:45 a.m. appointment. Or so I fooled
myself into thinking.
10:30 pm, I laid my weary and
in-need-of-showering head down on my pillow.
Promptly at midnight, my eyes flew open. About 5
minutes, and 263 random thoughts later...I decided
to toss in the towel, and haul my carcass out of
bed. Besides, if I quickly threw together the
suitcase, I would still have plenty of time to go back
to sleep and leave refreshed before surgery. Why
oh why do I torment myself with these ridiculous
All was going surprisingly well (which should have
been the first tip-off that the world was about to
stop rotating..), when I decided to start packing my
"everything bag". The "everything bag" keeps the
stuff that I don't want mixed up in a suitcase, and
the junk that, generally speaking, gets you through
several days in the funny farm. The Everything
has my camera, wallet, cross stitch, phone book,
medicine, bathroom bag, notebook and pens, etc.
You get the idea. My current Everything is a
beautiful brown and blue bag that was a gift from
our friend Lori, before Avalon's May shunt surgery.
Even though that surgery went horribly wrong, I still
consider the bag to be a special Good Luck charm.
After all, I brought Avalon home...
So, I began the "gathering" for The Everything. As
I moved the camera bag across the room I
suddenly realized it was far too light. I had a
sinking, awful feeling. After tearing apart the car,
the diaper bag and actually waking up Aurora at 2
am, the awful truth was upon me...I'd lost the digital
I got a grip and retraced my steps. I'd spent Tues
afternoon at Sam's Club, printing pictures of Avalon
with various staff members to take to the hospital
(as Thank You's) and at Meijers, doing pre-hospital
grocery shopping. Either I'd left the camera at the
Photo department of Sam's, or at the register when
I checked out at Meijers - dealer's choice. So..at
2:15 am I called Meijers. No luck there. The girl
was very kind, but the service desk and "Lost
Items" box were locked up tight until 7 am. The
manager on duty gave me a name to call and talk
to as early as 6 am, but there was nothing they
could do right that second.
Next call was to Sam's. I knew they ran a night
stock crew, so I had hopes there would be a
manager or security guy. Sure enough, there was.
Better yet, he was nice enough to go look around
the Photo Dept for me. A few questions later, and
instructions on how to turn the camera on and look
through pictures...and Miracle of Miracles...he had
my camera! Somewhere close to 3000 "Thank
You!"s later...he even said I could come and get it
now, if I wanted. Two thirty in the morning, I
headed upstairs to get dressed. A very sleepy and
rather annoyed Nick wondered who on earth I was
yelling "Thank You!" to at this ungodly hour? My
answer garnered a "Hurmph...." and that was about
it. Thirty minutes later, a wonderful, kind, sweet,
understanding (there aren't enough positive
adjectives at my disposal to do him justice) young
man handed me my camera. I was looking for a
300 man marching band to sing his praises. He
just said, "No problem," and walked away from the
door. I'm quite sure he'll never know how much
that simple act meant to me.
Needless to say, the 1.5 hour camera diversion,
didn't do much for my sleep timetable. However, I
did manage to get packed and still catch another
hour and a half of shut eye. That made for 3 hours
total, which left me in a better state than the last
The double good news, was being able to wake
Avalon up at a civilized time, and get her in the
shower for her pre-surgery scrub. Before brain
surgery you have to wash the child's hair with
Phisoderm, shampooing twice. Its preferable to do
it the morning of the procedure, but can be done
the night before. It was lovely to be able to do a
more typical morning shower, than the drag her out
of bed and toss her in the car thing that's
happened every other operation.
Once again, Nick and I divided and conquered.
Nick dropped Aurora off at the zoo for a volunteer
day, and took Ambrosia and Anam to our friend,
Marnita's house. As quick as the roads would
allow, he joined us in pre-op.
The first fun surprise of the day was being greeted
at check-in by our friend, Sarah. When the
Surgery Center closes for a few months while the
new facility is built, the Center staff will be sharing
space with the Surgery Unit. Therefore, the Center
staff has to learn to play by the S. Unit's rules.
Avalon had the distinction of being the first person
Sarah got to check in using the Surgery Unit's
methods. Let's just say...its a good thing it was
First, Sarah put Avalon's medical bracelet on me.
As she was fastening it, Avalon looked at her and
said, "Sar-ah (have to put the lilt in there), why are
you putting my bracelet on mom?! Hee hee, we all
giggled and Sarah made a new bracelet. Then,
after Sarah properly cinched up Avalon, the clerk
that was teaching her asked what label she'd put
on the bracelet. Turns out, the S. Unit uses
waterproof labels, not the ones the S. Center does.
Oops! Time to cut off that bracelet too. As Sarah
prepared the third try, Avalon ever-so-smart-alecky
says, "OK, Sarah, let's try this again..." and stuck
her wrist out. The teaching clerk couldn't believe it,
and we all had a rather good chuckle at Sarah's
expense. Sorry, Sarah! Thank goodness she
knows we love her!
Not to long after we were moved to the pre-op
room, we were joined by Doug, our marauding
pre-op gift-monger. Actually, he's now known as
"Uncle Doug" - that's how he's been hornswaggling
them to let him back there. Once again, he arrived
bearing gifts and wearing a huge grin. This time,
he brought a "star turtle". This little turtle has star
cut-outs on his back with a light in his belly. At
night, he shines stars on the ceiling, transforming a
bedroom into a magical night sky. Avalon couldn't
wait to try him out. Unfortunately, hospitals are
never dark enough to really appreciate him, so she
had to wait until we went home.
Doug also came with a table tent from Burger King.
Before we thought he'd gone batty, he announced
that he was inviting Avalon and her sissies to the
upcoming Jonas Brothers concert!! Major
squealing ensued... The table tent was so she had
something to "hold on to". I swear that man is as
funny as he is sweet.
Not too long after Daddy and Doug arrived, Avalon
was permitted to make her Ocean Room run. The
Ocean Room holds the owie toys for surgery
patients. You follow the Nemo's on the wall of the
unit, and they lead you to the magic room. Since
she'd been stuck with me for the last several
treasure hunts, Avalon opted to ditch me, and take
Doug and Dad on her sojourn. Fine with me...I
think the room looks cool, but the collection of
cheap rubber toys makes it smell a bit like a
Several minutes later, the trio reappeared, bearing
the loot of their pirate labor. Avalon had chosen a
giant green, sparkly, Koosh ball. I must say, as
Koosh balls go...this one is pretty fancy-pants.
Somehow it seems a bit wussy for the brain surgery
that was pending, but then again...all things are
relative. Heck, we're such rotten parents we hadn't
even gotten her an owie toy this time! I'm grateful
that at least the hospital produced one. (then
again, the Jonas brothers would have totally
trumped anything we could have done anyway!!)
Shortly after the koosh ball trip, the
anesthesiologist made her appearance. I won't
name names, but wow was I unhappy with the one
they sent in. I decided the universe gave us Dr.
Kosnik for a reason, I knew to trust him with
Avalon's care - and to trust that he wouldn't let this
person mess up. A few deep breaths, and we were
back on course.
Dr. Kosnik came in for his pre-op chat, and this
time...actually chatted! He must have caught God's
biggest fish on his most recent vacation, he came
back a new man. He was charming and sweet as
pie. And here's the funny thing, it wasn't that
saccharin hooch that Voldemort tried to feed us
after he messed up. Dr. Kosnik was refreshed,
rejuvenated, and the warm, loving man I've heard
rumors of. Go fish! He especially like our new red
hair. He's rather partial to redheads - all but one of
his daughters are!
Sending Avalon off to surgery was a bag of mixed
emotions. As parents, we were calm and trusting.
We knew she was going in with capable, skilled
hands, and decades of experience. Yes, there was
the twinge about the anesthesiologist, but my trust
of Dr. Kosnik over rode that. The gut-wrenching
part was Avalon's face. She was, once again,
terrified. Its a horrible thing to watch, knowing how
scared she is, and seeing her try to fight back the
tears. She's been through sooooooo much. She
knows there's nothing we can do. She knows she
just has to go through with anything we tell her.
She tries so hard to be obedient and compliant.
She tries so hard......but she's only 5. She's been
tortured, faced pain and treatments that most
adults can't dream of, and yet she's only walked
this earth 5 short years. Its so unbearably painful
to watch her be terrified, and have to remain calm,
to try to support her. Its awful to not be able to "fix"
what's scaring her. And no...it doesn't ever get any
easier... Those are the images that make me cry in
my sleep, or at my keyboard as I share them...
After those awful few moments outside the OR
door, we were met with a warm smile and loving
hugs by the waiting room receptionist. She's
always a bright spot in a gray day. We decided to
run down and grab a bite quickly, to make sure we
were firmly planted in the waiting area any time
close to the middle/end of surgery. So, after
checking in, we did a mild sprint to the cafeteria
and back. Truthfully, Avalon was probably barely
"under" by the time we had returned and scoped
out the "good" seats.
Pretty silly, isn't it? We've actually been in that
damned "Surgery Hospitality Suite" often enough to
know there are good seats. Thank you, kindly, I
could have happily lived out my days without that
knowledge. Ah well....such is life. We did strike up
a conversation with a family that came in and
waited near us. We were able to give them a brief
intro to the parts of the hospital they would need,
since they had arrived under emergent
circumstances, and were absolute novices. It was
nice to be able to help someone, it makes all of it
seem a little more tolerable.
Time passed pretty quickly, and soon we were
faced with a grinning Dr. Kosnik. He was happy to
report that she'd done beautifully, as good as was
possible. He even went so far as to joke that now
all we needed to do was figure out how to squeeze
some poop out of her. We got more than a few
odd looks as he made what could have been
construed as an obscene gesture when he was
referring to the squeezing out o-the turdola. I'm
telling you, he's a funny, funny man....
With the exact same timing as the last operation,
two smiling faces appeared as I was finishing up my
quick email update. Suzi and Tina (from the
Surgery Center) had to come sans Sarah, since
she was still across the hall training. They
bounced in with their typical grins and bear hugs.
They smiled, laughed, and did their normal job of
raising a ruckus as far as they raise my spirits. I
swear those women are like a giant youth serum.
They instantly make me a giggling school girl.
Darn shame I can't bottle them, for use at my
We were also visited by Dr. Fedel, another Surgery
Center friend. Dr. Fedel has been Avalon's
anesthesiologist several times. We just love her.
She and Dr. Martino from the Surgery Center have
made repeated OR trips seem casual to us. We
know Avalon is in such good hands, its entirely
taken the fear out of general anesthesia for us.
That's a gift that's hard to explain.
Soon after our visits, we headed up to PICU. We
didn't want her to beat us there again. We were
only in the waiting area a few minutes, when they
came to get us. They nearly missed us. Somehow,
no one had entered Avalon into the PICU
computer. The receptionist in the ICU had no
record we were coming - she actually had to
physically track down a nurse to see where Avalon
was. Oh...you have to love technology!
We were disappointed to see we were in the
"curtain corral" for this PICU stay. Basically, these
aren't rooms, they're merely areas of a bare floor,
that are surrounded by curtains resembling retired
circus tents. I'm telling you, a fart can be heard 20
"rooms" down. In a word, Curtain Cupboards suck.
We were, however, thrilled to see our nurse for the
evening. Christina is an old, dear friend. Christina
is a float nurse, she works all over the hospital.
While we've had her occasionally on J-5, and even
in Heme-Onc clinic, we know her best from Avalon's
diagnosis stay. She was friendly, supportive and
wonderful to us that week. She really understood
where we "were", because her own kids are nearly
identical in age to Avalon and Ambrosia. She could
really put herself in our shoes.
It was nice to catch up with Christina, kind of made
PICU seem "homey". It even made the ugly
curtains more bearable. Best of all, Christina
shared something with us. We had no way of
knowing that those first few days after Avalon's
diagnosis (her ALL- cancer dx in 10/04) were also
Christina's first days on the unit. She shared that
Avalon was only the second cancer kid she'd ever
taken care of. She went on to tell me that she bet I
never knew Avalon had been responsible for policy
changes on the unit. When we had bombarded
Christina with "new diagnosis" questions, she'd
been unable to help us, as she was a "newbie"
too. As a result, she'd made a concerted effort to
talk to the charge nurses and unit manager,
lobbying to make it policy that new parents only be
given experienced nurses. She worked to ensure
that the newest families, those in need of extreme
support, should only receive care from seasoned
personnel who would be able to better meet their
immediate needs. This wonderful woman not only
put her heart into helping future cancer families,
she was gracious enough to share the process with
us. It was a gift of the heart, and I'm grateful.
|Hawgs was her surgery friend this
|Here's the sparkly, green Koosh
ball. She's thrilled!
|Yep, Daddy's hair is red too!
|"Uncle" Doug and Avalon's Jonas
|Kim and Liz, PCAs we know from
J-5. Liz has become a dear friend.
|Thank you Jennifer and Jeremy!
|We managed to convince Avalon to
open up a few owie presents that
she had received in the mail. (We
tried lots of distraction techniques
to get her mind off of food!) This
group was from her Angel Tammy.
Thank you, Tammy!
Avalon was much less active this time. Rather than the grinning, hungry, chatting girl that
greeted us last surgery, Avalon was sleepy, sullen, and reserved. This was definitely going
to be a different day. In fact, Avalon was so quiet, that Nick opted to leave rather early, to
save Marnita from Ambrosia and Anam. She was kind enough to keep them for us twice - we
didn't want to take advantage of her. Besides, Avalon wasn't interested in anything but her
The evening brought surprise visitors, my dad and sister. Pappo stopped on his way to our
house, from Dayton. Pappo had returned to work during the last surgery, to save his
vacation days, to be able to help us out this time. He was arriving for his Thursday and
Friday kid-duty. He definitely brought a smile to Avalon's face, even if it was only a little one.
Next to arrive was Aunt Nettie, on her way home from work. Pappo was rather indignant with
Christine, she wasn't nearly as ornery to Nett as she had been to him...
Both Pappo and Nett were good for Avalon, they distracted her from how rotten she felt.
And happily, they were also there to witness her food obsession. I'd have been heartbroken
to have seen and heard what I did without witnesses...some things are just too funny to see
Avalon's greatest gripe about any surgery is having to starve beforehand. And it absolutely
chaps her tiny heinie, that doctors make you wait to eat after you're awake. Once her eyes
are fully open, its time for food...done. Unfortunately, the medical establishment disagrees.
Like I said previously, this surgery left her pretty quiet for most of the day. She really only
"woke up" once Pappo was there. Waking up equals food to her, so the bargaining began.
Avalon: "Can I please have some food?"
nurse: "No, how about some juice first."
Avalon: "Hey, I drank the juice, can I have some food now?"
nurse: "No, how about a popsicle? If you keep that down, maybe some food..."
Avalon: "OK the popsicle's gone. Can I have FOOD?!!!
I think the nurses finally just gave up, and figured she'd pay the price if she threw up. (think
about it, jaw surgery and barfing would make a horrendous combination) They finally let me
order her the spaghetti she'd been begging for. The pictures you see - are of Avalon
INHALING the spaghetti. She didn't eat it, she demolished it. Godzilla, himself, couldn't have
scarfed it down faster. She was so ravenous, that after she polished off the noodles, we
even caught her licking the plate clean! I'm pretty sure my dad damaged an organ or two in
fits of hysterics. You really can't describe how funny Avalon's little feeding frenzy was...
It didn't take long before the plate-licker was demanding round two of pasta perfection. The
nurses were utterly, completely, entirely opposed to that. They thought we were nuts for
even asking. Eventually, I over-ruled all of them, and ordered the second plate. Dad-blast
it, Avalon's been down this road often enough. If she wanted spaghetti, we shouldn't be so
dorky as to argue with her. We weren't the ones who would be puking - she would!
Squatter's rights, if you will.
The best quote of the night was when Spaghetti number 2 arrived. I should explain how food
service works at Children's now. The hospital has switched to an "on demand" food service.
Patients call in orders, any time between 7 am and 8:30 pm. You order from a really
extensive menu, and in the quantity that the child wants. A personal server then delivers the
food within a 45 minute time window. In fact, if you've not ordered within a few hours of a
normal meal time, they will even call you to ask if the child wants anything. Its not only very
handy, its brilliant! It allows parents to keep cranky, finicky kids about 10 times happier than
ever before. I'm a huge fan.
So, here he was, the magic Spaghetti man. Before he brought the new tray in, he
temporarily left it on a nearby cart, and came next to Avalon to remove the "empty" tray.
Next thing we hear, Avalon is shrieking, "Where is he going with my spaghetti?!!!" Poor
man, he was simply making space. And here, my hunger-demented mini-minion nearly bit
his head off!! Couldn't count on my sister or father for anything...they were too busy doubled
over in hysterics...
After slurping her way through Spaghetti #2, and most of a vanilla ice cream, Avalon finally
decided she was going to survive. It was tenuous for a while...but eventually, her stomach
decided she was done. Good thing too, I think she scared the food guy...
Nett went ahead and headed home, and Pappo stuck around for a while. I'm glad he did, he
has lots more hutzpah than me. While Avalon was slurping her Noodles-from-Heaven, one
of the curtain corrals caddy-cornered from us had emptied out. From dad's vantage point,
he could see that the other corral contained a rather lovely-looking recliner. He began
campaigning for me to go swipe it, and trade it for the wooden rocker I was stuck with. While
the rocker was lovely to sit in, it certainly wouldn't help my sleeping situation the way a
recliner would. After much, MUCH encouragement...I finally conceded to ask the nurse
about it. She was all for it! My dad was more than a little smug about his moral victory. He
was sure to tell the nurse what a wimp I'd been. My turn for a good laugh at my expense.
That's OK, my pride can take a pretty good hit, when it senses a better night's rest.
The evening ended (or as you can see in the next entry...the night started...) on a slightly
humorous note. As the night shift came on, a very sweet doctor came and plopped down
next to me on the couch. With a giant grin and mischievous eyes, he asked, "So...why
exactly are you here?" Turns out, it wasn't just the ICU waiting room that didn't have Avalon
in the computer...the entire unit had no idea we were coming! The day doctor had told this
night doctor, they didn't know anything about why we were there. How's that for instilling
great faith in a patient's parent? Good grief...you'd think the day doctor would have had the
coconuts to come and ask me a question or two.
It only took me a few minutes to catch up Dr. Grins and to give him all pertinent background
info. He was the first one to explain why we actually get sent to PICU. He said that anytime
the barrier of the brain is compromised, patients are sent to the ICU for at least a 24
observation, because problems that arise can go very bad, very quickly. Nice to know, wish
someone would have clued us in last operation, before we had the PICU heart attack.
Oh well, such is life. No sense looking backward - you'll only fall on your face doing that.