Our
Journey:
Avalon's Army of Angels
October 22, 2009
Thursday, Day 8 how many ways can you say bored?
How many ways can you say bored?  Hmmm...Bored, Bored, Bored, Bored,Bored!
I'm guessing you get the idea...  Basically, the Princess is feeling better.  With the exception of
the blown IV sites, she's feeling fit as a fiddle.  Fiddle girls do NOT like being shackled to a bed.
 Fiddle girls are squirmy, bubbly, and prone to pushing their medical limits.  Fiddle girls are
cute.  

As for the IV sites, those are still making her miserable.  Her right foot IV infiltrated back on
Sunday, and she is still putting as little weight as possible on it.  She tells us, "It feels like there
is a brick on my foot when I step on it."  A pretty fair description of what a pocket of fluid
pressing down on nerves should feel like.  Avalon's nurse, Shawna, alternated ice and hot
packs last night and they seemed to help.  (thank you all-knowing and super-sweet Shawna!)

The morning started off funny.  Avalon slept in like it was her job.  She missed several people
in and out, and basically ignored our existence all morning.  Then, the room door opened
about 6 inches, and a quiet voice said, "It's the Art Cart...."  Avalon shot up like she'd been
electrocuted!  In one swift motion she was straight up, and called out, "I can sit up!  I can paint!!
 Can I have paint PLEASE?!"  I can't do it justice, it was really hysterical.

Avalon's favorite thing to do in the hospital is paint.  She LIVES for the art cart to come around
so she can scab paint.  She paints little paper mache boxes if the they have them.  She paints
on construction paper.  She paints, paints, PAINTS!  We always leave the hospital with lots of
treasures.  Earlier in the week, Child Life had come around and tried to help her out.  They
brought squeezy paints that flow out of the end of the brush, thinking maybe she could do that
lying down.  Ummm...the gigantic mess I cleaned up was proof she
couldn't.   But you can't fault
the CL lady for trying.  

Avalon started today in the best possible way...with
paint!  She happily painted a pink and
yellow striped wooden elephant cut out and several construction paper pictures.  She painted,
grinned, and started her day with lots of fun.  Obviously though, she is still battling somewhat of
a headache.  She is still sitting up to paint or eat, then laying herself down for while to
recuperate.  That's perfectly fine by me, it means she's easing herself back into life, a great
skill to master.  

We had two visitors today, but we could have had more if the hospital hadn't turned into a
military state.  OK, I do totally understand that H1N1 is on overdrive around here.  The hospital
is bursting at the seams!  PICU has NO beds, they have taken over part of PACU to house
more patients.  Old units that haven't been opened in years are open and full.  The hospital is
offering insane amounts of money to get staff to work extra days.  So yes, I totally "get it" - but
you are the one stuck inside, it's still hard to swallow.  Worse, when you really needed to see
someone...it breaks your heart.

The room phone rang this morning and it was Karen from the front desk.  She said she had my
friend, Jen, down there, and since Jen couldn't come up, she thought I'd like to talk to her.  
Jen's son, Matthew, was at the hospital today to do repeat scans.  Matthew is a brain tumor
patient who relapsed early this year.  On routine scans they found a spot on his liver.  The
concern is that the cancer has traveled down the VP shunt line and seeded in his abdomen.  I
didn't know any of this until the phone call, because I haven't been home to see the updates.  
Worse, here is my friend, desperately sad and in the worst place you can imagine
emotionally...and I wasn't allowed to see her!  The doctor said the possibility of cancer traveling
this way is very rare.  Also, he told them that if it had, it would be everywhere, not just one spot.
 Hence the new, different scan - seeing more of the abdomen.  My heart sank when I asked Jen
what her gut feeling was.  I've come to rely on those - for no matter what the odds are, or what
they tell you...a mom's heart knows.  Jen's heart holds bad feelings.  Please, pray for them.  

When I hung up with Jen, I immediately called our friends Stu and Christy of Delaware Road
Hawg fame.  Stu and Christy had said they were going to come visit today, and I wanted to try
to head them off at the pass.  When I found out they were already getting off the highway, I told
them they were now "Aunt Christy and Uncle Stu".  This works fine unless they really start
cracking down.  If H1N1 gets too much more out of control, they may limit visitors to registered
ones only.  BLECK!  

Stu and Christy brought Avalon two small pumpkins and markers to decorate them with.  She
was thrilled!  Heck, she barely talked to the two of them, she was too busy in artist mode.  
Avalon did, however, decorate the pumpkins with Stu and Christy in mind.  One pumpkin was
Chapel Hill house, complete with motorcycles like at the fundraiser Poker Run, and with the new
mini-donkeys Yogi and Boo.  The other pumpkin had faces.  They're so cute!  I have to
remember to get close up pictures of them to post.  

Stu and Christy couldn't stay long, but it was fabulous to get to see them.  Sadly, they shared
that their son, Tyler, has opted to go back to the Middle East.  He has enlisted with Lima
Company as a medic, and is headed out any day.  Tyler is an outstanding man and an amazing
medic.  He has already done a round in the ME as a contracted medic, has worked life flight for
Children's Hospital, and works for the fire station a few blocks away.  He has been my mental
"safety net" the past few years, knowing that his skill could be our saving Grace should tragedy
strike.  I really love Tyler, and feel deeply for Stu and Christy.  So Tyler, you keep yourself in
one piece!  Thoughtful, patriotic, brilliant men are hard to come by...this country needs you
alive!  Be well, my friend, and come home safe.

The massage therapist came back late today.  She'd been here several days this week.  She
started because Avalon's back hurt so bad from the fluid build up.  A few days, Avalon told her
she didn't need her, so we skipped the massage.  Today, Avalon asked her to help with her
foot that was bothering her.  I then made a colossal mistake, I asked Avalon to let the therapist
work on her hands and arms too, to try to help them get ready for more IV's.  The mention of IV
sent Avalon over the edge.  She didn't scream or wail, she just got this terrified look, and
began quietly crying and kind of shaking.  

About that time, Carrie our NP walked in.  Carried took one look at Avalon and asked why so
sad?  I explained about my comments and Avalon's new-found needle terror, and the massage
therapist did her best to help us calm little miss.  That's when I brought up an idea with Carrie,
could Avalon possibly get a PICC line so we don't have to keep sticking her for all the
surgeries?  Funny enough, that's exactly what Carrie was coming to ask me!  She'd had the
exact same thought, and wanted to know how I would feel about it.  Check, check...we agreed,
now we just had to work it out.

What followed was quite a bit of insanity.  To fully cover all conversations would take pages
upon pages, and I'm still not sure I could do it all justice.  I'll do my best to short-hand it, but
trust me...it was bonkers.  The first question was, could we get Avalon schedule with
Interventional Radiology tomorrow morning, before going to the decompression surgery?  If so,
we'd have to get an IV started on the last remaining site late tonight, hoping like Hades that it
didn't blow either during the start, or before morning.  

A while later, Carrie came back to say, NO, we couldn't do the PICC first, Avalon can't handle
conscious sedation.  Oh, I thought Carrie knew that, oops.  Then, we tried to schedule Avalon
to go under GA (general anesthesia) in IR, then be transferred directly to OR for surgery.  
No...that couldn't be worked out either.  So, either we postpone surgery, or we take Avalon to
surgery with the one IV site we had left, hope for the best, and schedule the PICC next week.  

About this time, the anesthesia doc shows up to do his pre-surg Q & A session.  Much to my
utter amusement, one of the other anesthesiologists that knows Avalon really well, had already
filled out the anesthesia pre-surg history form.  That may sound small, but A) it means they
REALLY  know her, and B) it was sweet of them to not make me do it for the 101st time.  Silly, I
know...but it really touched me.  Now that I had my hands on an anesthesiologist, I asked him to
weigh in on the IV/PICC debate.  He pretty much nailed it.  He was very concerned about going
into surgery with only one site available.  He said this surgery REQUIRED two sites.  That if he
wasn't able to get a second site to work (he would attempt it after she was asleep) he'd be
forced to put in an emergency central line, an IJ (jugular line).  He was adamant, if it was his
child, he'd cancel surgery, get the PICC in place, and reschedule.  That was good enough for
me.  

Before the anesthesiologist left, Carrie happened to come back.  The two of us filled Carrie in
on our conversation, and we all agreed, surgery would need to wait.  Carrie was headed out,
so the rest of the conversations were with Christy, another beloved NP.  Christy then went to
see what she could make happen.  

A while later, Christy and I were talking about schedules, timing, etc, when Dr. Kosnik came in
unexpectedly.  When I asked him if he knew what was going on, he didn't.  I filled him in quickly,
and he was DEFINITE...there would be NO IJ line for one of his kids.  He agreed that getting a
PICC in place was the best idea, and acknowledged that Avalon usually needs more IV support
than most patients, thank you GI issues.  We all agreed to send us home over the weekend,
come back in outpatient to get the PICC, and then re-schedule surgery.  I asked Dr. Kosnik to
please explain to Avalon what her limitations were, so she would really pay attention.  When
mommy says something, it often falls on deaf ears.  When big giant neurosurgeon says it...she
listens.  (she loves Dr. K)

After today,  any question about why I also love Dr. K should be answered.   Dr. Kosnik is
known to be a hardball, most people in the hospital are scared of him, and his bedside manner
leaves a bit to be desired.  So, when I asked him to please speak to Avalon and he became
deadly quiet and looked pensive...I was worried.  Next thing I know, he says, "I need to speak to
you in the hall."

Well, crap.  Has anyone ever had a good discussion with a doctor "In the hall"?!  So with
enough dread for 10 people, I slinked to the hallway.  There, a very large, very ominous
surgeon leaned over and quietly said the following.

*"I can't do surgery next week.  Next week is Trick or Treat, and she can't miss it.  I promised
her she could go, and I won't go back on my promise.  She can't miss Trick or Treat, or she'll
never trust me again.  She's stable and safe, so we have to wait until after Trick or Treat."*

Yep, I cried.  I cried, hugged him, and gave him a smooch on the cheek.  What surgeon in the
whole world ever cared about Trick or Treat?  Our nurse, Gada, was floored when she heard it.
 She said she could understand Christmas, or maybe Avalon's birthday...but Trick or Treat?  
The thing is, Dr. K truly cared about *Avalon* and what was important to HER heart.  Not his, not
mine...hers.  He really thought about the child.  If Avalon had the misfortune of being butchered
by her Voldemort, then at least she's also had the GOOD fortune, of finding her Dumbledore.  
Thank you, my Dumbledore, I appreciate you more than I can possibly say...

After Dr. Kosnik left, things went quickly.  My sister arrived for her daily post-work visit, only to
find me starting to pack!  Lori, of Doug and Lori fame, also came for an unexpected visit.  
Within a few short minutes, the three of us were tearing apart Avalon's Halloween wonderland.  
Christy was back in mere minutes with news the discharge orders were in and done.  Gada was
there a few minutes later, ready to have me sign the papers, and give me my 'instructions'.   At
this point, the whole instructions thing is humorous.  The phrase
Been there, Done that pretty
much covers it.  

Long story short, with Lori and Nett's help, we were ready to skeedaddle in a flash!  Although,
the two of them got hosed.  They came to hug a cute short person, and ended up helping her
mom schlepp piles of stuff to the car.  Thankfully, they were both very sweet about it.  We were
all so surprised to be free...we couldn't believe it!  Avalon was beside herself.  Annette and I
were trying to chat about events, and Avalon kept badgering us to be quiet and GET HER
HOME!  We fully understood, shut up, and I started driving.  :-)  

Avalon sang the whole way home..."
I'm going home...going to see Ambrosia, going to hug
Anam, going to see Avalon.  I'm going home...."  
The song changed as we went, but the theme
was the same for the whole 40 minute trip home.  Avalon was IN HEAVEN.    

My favorite conversation with Avalon went like this:

Ava:  "I'm going to hug Aurora 50 times! I'm going to hug Princie (our dog) 50 times!  I'm going
to hug Oliver  (our cat) 50 times!  I'm going to hug Daddy 50 times!  I'm going to hug Anam 50
times!  And I'm going to hug Ambrosia 20 times!"

Me:  "Why does Ambrosia only get 20 times?"

Ava:  "Isn't 20 more than 50?"

Me:  "No, sweetie, 20 is LESS than 50, 20 is smaller."

Ava:  "Oh....  Well, I'm going to hug Ambrosia 50 times...and then even more!"  

Oh yeah...she's happy to be home......
Uncle Stu and Aunt Christy
Avalon's door decorations,
Avalon made the little Trick or Treaters with a
craft kit from my Sunday Retail Therapy
Child life brought in the Haunted House cut out
of paper.  Then, she helped Avalon glue the
house on a background and decorate it using
some of the foam stickers I bought and a white
crayon.  I love it!
Peeking into the room from the hallway.  You can see the pumpkins on the window sill above the couch.
Munching on Doug and Lori cookies.
Flowers from a much-loved friend.  Avalon's light
up pumpkin.  A fantastic Haunted House balloon
from Aunt Nettie.  Avalon's painted pink and
yellow striped elephant.
Looking into the room from the hallway.  The door of the room is open, but it's
closed at the same time.  You see, on this unit, the room door doubles as the
bathroom door!  Currently, the room is open, but the 'bathroom' door is closed.  
And yes, we HATE this design.
Torture device they try to pass off as a bed.  
To be able to sleep (ha ha, as if that ever
happens) - you herniate yourself lifting up the
end of the couch by the wall.  When you lift, you
must violently shake it (thereby ensuring bodily
harm) to loosen the locking mechanism.   You then
pull out that end, and take the two sumptuous
pillows from the back of the couch.  You turn
said pillows sideways to fill in the empty space
from yanking the bottom apart.  It is to be
noted, the pillows are not as wide as the flat
part of the couch.  There is a size discrepancy.  
Oh yeah...it's nothing but luxury here...
My pillow cases glow in the dark!  Also, please
note the secret ninja coffee pot.  It makes me
happy.  :-D
One more attempt to explain the ridiculous room design.  In these pictures, the 'Room Door' is
closed, thereby leaving the 'Bathroom Door' open.  Please also note the shape of the bathroom.  It is
triangular!  Around the corner, left side of the picture is a tiny shower.  The shower is a perfect
triangle, and so small, all of me would not fit in it.  It doesn't matter though, they haven't worked in
years...  Seriously, they leaked out onto the floor, other rooms, etc.  Even the knobs have been
removed now.  BTW, the potty is so close to the door, that you live in constant fear of your knees
hitting the door and knocking it open.  You see, these are fire doors, so they don't actually 'click'
when they are bathroom doors - they are held in place by old, ancient, not-reliable magnets.  
Seriously, a good fart, and you blow the bathroom door open, thereby leaving you flashing the world
via the little window into the room.  I usually potty while twisting myself into inhuman forms because
I'm hanging onto the door for dear life....  The consensus is, these rooms were designed by A MAN.