Subject: July 17, 2008
The day started off pretty dubious. After spending a
night twisted into an entirely unnatural position, my
knees were less than pleased with me. First thing out
of the box, I tried to stand up and experienced a, "Hello
floor, meet face." moment. Lesson learned, next time, I
wait a moment or three, and let the old knees wake up.
We were supposed to be transferred out of PICU pretty
early in the day. Avalon was doing well and was
definitely far below the required care of a normal PICU
patient. Unfortunately, T3, the neurosurgery/neurology
unit didn't have a bed. We ended up staying in PICU
until 10pm that night. Truth be told, I'm grateful we did.
Our day nurse for the 7am-7pm shift was primarily a
man named Doug. I'm forever grateful for having met
him, and the length of time PICU enabled us to be able
to chat. Doug has been a PICU nurse for 10 years, and
was an EMT before that. He was as brilliant as he was
intuitive and insightful. In a few hours, Doug taught me
more about pain management, and about my own
daughter than anyone I've ever met in the past 4 years.
I learned that we've horribly under-medicated Avalon for
her last two shunt surgeries. Doug helped me learn
what behaviors to watch for when Avalon has switched
to her "self-comfort" mode. I learned that we can't
solely rely on her blood pressure/heart rate indicators.
By doing so, we had been allowing her to experience
excruciating pain for long periods of time. By the time
we saw what we saw...she was in real trouble. It was
like meeting Avalon for the first time. And yes, it was as
disturbing as it was enlightening. It still makes me
nauseous to think of how our ignorance made her
I also learned to get over my PICU paranoia. Doug and
I had a lovely chat about how Heme-Onc parents and
patients see the PICU department. Most services
(departments within the hospital) see PICU as a tool.
They send kids there who need multiple pumps, extra
monitoring (like Avalon), or are experiencing a higher
care level need than their floors usually provide.
As I've often said, the Heme-Onc unit is an entirely
different world compared to the rest of the hospital.
Heme-Onc nurses are used to dealing with 8 or 9
simultaneous pumps, blood products, oxygen, etc. On
J-5 (the Heme-Onc floor),the nurses will stand on their
heads to keep from sending someone down to PICU. Its
almost seen as a failure. Worse, its very rarely needed
until a child is sooo sick...PICU becomes the final walk.
As a Heme-Onc parent, you learn to cringe in horror
when you hear that a child is being transferred down
there. You know that means heartbreak for another
I've had 4 years of such "training" to establish my
paranoia. It was nice to meet a wonderful, warm nurse -
and be able to let go of my fears a bit. Of course,
children do often pass there, its the nature of the beast.
And, sadly, a large percentage of them are Heme-Onc
kids - for the very reasons I outlined above. But the
vast majority of kids leave the PICU - and go back to
childhood and happy parents' arms. The successes far
outnumber the losses, due in part to expertise, but
mainly due to good old fashioned conviction. The PICU
nurses and docs take each child personally. They fight
to keep them here for their parents as hard as the
parents do. PICU isn't scary, its actually quite beautiful.
I learned a lot today, I learned to see things from a
Avalon passed the day zoned out watching TV, or
sleeping. She tried to color the big velvet poster we
brought with us, but was frustrated with having to use
her left hand. Usually they try to put IV's in the child's L
hand, to free up the right - but they'd obviously had
difficulties. Avalon has terrible veins - they blow
constantly. She came out of surgery with 3 pokes in the
L hand, an IV (and we learned later, a 2nd poke) in her
R hand, an IV and 2 other pokes in her R foot, and 3
failed pokes in her L foot. She was a bit of a pincushion.
We did have two fun visitors, though. Adventures for
Wish Kids came with a toy cart. Usually, they miss her
on T-3. Adventures has lots of cancer kids, so they go
to J-5, but we've never seen them on T3 before.
Anyway, they did find her in PICU. She was able to pick
out a Hannah Montana doll. It may be the loudest, most
obnoxious toy ever created by mankind. Avalon loves
it! She has a different Hannah doll that was sent by her
Chemo Angel. The two dolls sing different songs, so
she was thrilled to establish her own little concert.
However, it is to be noted, some twisted, demented
monkey's patootie re-mastered the new doll, increasing
its volume by a multitude of decibels. Its sheer torture....
When the Adventures team heard that Avalon had also
done her MRI with no sedation, they decided she
deserved another owie toy. She is now the proud
owner of a Lil' Kinz, better known as a mini-Webkinz.
She couldn't be happier.
Our other visitor was a complete shock. A woman
approached the room, nicely dressed, and obviously a
hospital employee. When she came in, she asked, "Is
this Avalon?" I said yes, and she answered with, "ME
TOO!" I couldn't believe my ears!!!
Avalon the Greater, said she'd been croaking to meet
Avalon the Lesser. In a you've-got-to-be-kidding-me
revelation, it turns out the Avalon the Greater is actually
the social worker for the neurosurgery department!
Who flippin' knew? And cripes almighty, two years on
the service and no one had ever mentioned this to us. I
decided to collectively smack the Cheetos out of the
Avalon the Greater had never stopped to see us
before, because she knew Avalon the Lesser was still
under the care of the Heme-Onc social worker, Marcy.
Avalon the Greater hadn't wanted to step on Marcy's
toes, so she'd never come to visit. Funny enough, I'm
quite sure Marcy would have encouraged it, she's about
as sweet as they come. Marcy will, however, be
receiving a Cheeto Whack too, for not cluing us in
about the existence of Avalon the Greater. Its just
such a neat thing!
Avalon the Greater said she's never met another
Avalon in her entire life. She said that she couldn't
resist coming to say hello any longer. I'm so glad she
did! I had to get their picture together, I was sure no
one would believe me if I didn't. I can whole-heartedly
say I hope Avalon the Lessor follows in the Greater's
footsteps, she was extremely sweet.
The rest of day was pretty rotten on old mom. Because
I had no relief, I ended up not eating for slightly over 24
hours. While that would be stinky for nearly anyone, for
a hypoglycemic - it was a nightmare. By 6 pm, I was
feelin' funky. I was also feeling perturbed, anxious, and
downright mean. Thankfully, the PICU nurse that had
taken over Avalon's care, realized that I'd never left the
unit. When her other patient fell asleep, she offered to
sit with Avalon long enough for me to run and eat.
While Avalon had tried to hornswaggle, "That nice guy
in the blue outfit," to stay with her, she was long asleep
by the time the substitute nurse did. She never knew
By 10 pm, a much happier, much friendlier mom and
Avalon were finally transferred to "home", T-3. As I
sighed a huge relief at returning to our comfort zone, I
had a small epiphany. Somehow, its rather daunting
that we've adopted yet another entire floor of Children's
as home. Then I had to laugh...a mere 18 months
ago...I was horrified at having to be sent there, rather
than to J-5. Oh...how time flies and the universe can
You know what? I think its pretty cool we're so
comfortable on T-3 that we can have that happy,
welcome-home feeling when we get there. There are
definitely worse things in life!
Avalon's Army of Angels
|I am so NOT happy about the
whole left-hand thing!
|I wonder what's under there?
|A PICU room please note in the right hand picture - the communist torture
device that they ever-so-erroneously call a "couch". Please also note that it is
NOT suitable for slumber of any kind.
|Avalon the Greater and Avalon the Lessor
The Lessor is proudly posing with the maniacal,,
hearing-aid-inducing Hannah Montana doll.
|Trying to make that other