Our
Journey:
Avalon's Army of Angels
Friday October 16, 2009
Day 2 - hating on the residents
Long story short, do not wake me up at 6:45 am, ask me questions you should know the
answer to...say stupid things, and expect me to think your IQ is above 12.  

This morning's resident actually said to me, "Well, I'm confused.  So, does she have high or
low pressure?  I don't know why you're here."  OMG!  Did he seriously just
say that?!  So, one
resident makes Avalon go without pain relief, the other one doesn't know why we're here.  
Fan-friggin'-tastic.  

Sure enough, Avalon was refusing to eat or drink.  She was firmly planted on one side,
staring into space, not really responding much to anyone.  I finally pushed it and asked the
NPs for morphine.  After all, it would go one of two ways.  If Avalon didn't need the morphine,
it would zonk her out for hours.  If she
did need it, it would obviously perk her up and maybe
even convince her to eat.  Around 1 o'clock, the first morphine dose arrived.  Avalon was
asleep, or passed out, however you want to think about it.  Basically, she was in total shut
down, trying to deal with the pain.  Morphine went in the IV...and viola!  Fifteen minutes later,
she suddenly opened her eyes and asked for food.  Hmmm...what do you think?  DUH!!!  She
was
MISERABLE you moronic resident!  She needed help!!!  GRRRRR.......Momma Bear
was/is not even remotely happy...

After that first dose, morphine was ordered for every 4 hours prn.  Later in the day, we ended
up increasing it to every 3 hours, alternating with Toridol to try to get ahead of the pain.  By
hour 2 (after a morphine push), Avalon was consistently showing signs of crashing again.  
Thankfully, Carrie knows Avalon well enough, she can recognize when Avalon is miserable.  
I'm grateful for that, we've underserved her pain for years, a horrible thought that makes it
difficult to sleep some nights.  It's a guilt I'll never fully let go of.

As it turns out, pain would be the theme of the day.  Early in the evening, the instructor for
the student nurses noticed that Avalon's IV didn't look quite right.  He requested the nurse
call the IV team and ask them to come look at it.  Next thing I knew, the nurse was in
disconnecting Avalon and removing the needle.  It turns out, Suzy had left a note for the
Friday IV team, that if Avalon had continued to complain about pain, or if the nurses ever had
a question, to just remove that IV, that she felt it was never a good one.  The truth is Avalon
had never quit complaining about it.  Every time a nurse rounded and did the normal IV
check, Avalon would flinch and complain about how much it hurt.  Every medicine push, every
flush made her wince.  Normally, Avalon is great with IVs.  She has way too much experience
with them, so the constant complaining was enough out of the norm, I wasn't sorry to see that
one go.  As it turns out, maybe I should have been.

NP Carrie happened to be in the room chatting when the IV team came.  When they walked
in, I had no worries.  The smiling faces were those of Sharon and Ramona, two of the best on
the team, and two women who have saved Avalon more than once through the years.  I knew
Avalon was worried, but I wasn't.  Famous last words.

Don't get me wrong, nothing that happened was Ramona or Sharon's fault.  They were their
typical, wonderful, professional selves.  The problem lies squarely in Avalon's veins.  They're
horrible.  Long, painful, terrible story short....we blew 5 more veins trying to get access.  At
least one of them was Avalon's fault, she flinched severe enough it kind of popped the
needle.  But honestly, the flinch was completely involuntary, she couldn't help it.  

Carrie, Sharon, and I pinned Avalon down, while Ramona did the sticking.  Avalon was
pathetic, sobbing, and trying to be good, saying, "Owie....owwww...it
hurts."  She tried to be
good, but how good can you be when your veins are
exploding?!  Honestly, it was horrific to
watch.  The bruises are instant, the bulges from blood and fluid happen so fast you can't
believe it.  No kidding it hurt!  I have a firm belief in staying calm around Avalon, no matter
how sad/upset I am.  Getting upset doesn't help her, it feeds the problem.  This time, it took
all I had not to cry with her.  I felt
so sorry  for her, it made me sick to my stomach.  Carrie is
pretty rotten at hiding her feelings, it was easy to tell she felt sorry for her too.  (love her for
that!)  

We all did our best to distract Avalon.  Sharon was singing Mylie Cyrus' "The Climb", and we
were all trying to goad Carrie into singing too.  At the very least, we tried to get Carrie to bust
a dance groove for us, but she wouldn't bite.  As painful as it was to live through all of it, the
gentleness and willingness of Sharon and Ramona to break out of the professional box to
sing for Avalon...made the nightmare bearable.  They cared that Avalon was hurting.  They
were humane enough to feel sorry for her - no cold hearts here.  Of course, when misery
comes knocking and mommy gets desperate - it's time to resort to Bribe Therapy.  Avalon
informed me that
one Bratz was surely not enough.  (she'd forgotten she'd already badgered
me into two.  I wasn't going to remind her!)  So...in the middle of sobbing, Avalon worked on
me for TWO Bratz.  And...as the pain continued....a new hamster thingie.  (can't remember
what they're called)  It's a good thing I have Avalon trained to think small.  In the moment, I
might have promised her the moon if she had asked..

Eventually, we had to give up on Avalon's arms.  There were simply no options left.  I
suggested Avalon's feet.  We have often gotten her back from a general anesthesia with IV
marks on her feet, so I know they are easy to hit.  Sure enough, there were plenty of
available and easy-to-find veins, so foot it was.  After waiting for another round of numbing
cream to work, 1-2-3, easy as can be...we had a new IV in her foot.  The insertion was so
easy, a terrified Avalon kept asking if they were "going to do it.  Are you ready?  Is it time?"  
and it was already in.  Once she was all taped up and done, she was thrilled to report it didn't
hurt at all!  A huge, and welcome, change from the hand IV.  

The only trouble with a foot IV is that you can't walk around with it.  So, oh big deal, we had to
order a bedside commode so I could just plop her on the potty rather than trying to get her
across the room into the bathroom.  Simple problems like that, I'll take.  

Enough bad stuff.  The bad parts of the day can be summed up easily:  LOTS of pain, from
her head, her back, her pincushion arms.  Pain,
pain, PAIN.  'Nough said.

How about some good stuff?  We were pleasantly surprised last night when a mom wandered
into our room early in the evening.  It turns out, one of our Georgia friends is also in house at
the moment.  Last year Dr. Kosnik asked me if I would be willing to meet with two other
pseudo tumor families.  The two families had come up from Georgia, seeking out Dr. Kosnik
on the recommendation of Drs from Ohio State.  Both children had intractable pressures and
both had been through multiple surgeries for failed shunts.  Dr. K was recommending
decompressions like he did for Avalon, so he wanted me to answer questions that only a mom
could.  Fair enough.  One dinner later, we all hit it off.  The fact is, our kids are pretty rare.  
It's nice to meet people who understand the quiet hell your child goes through...

Moving forward to last night, here they were, two of our friends, literally right across the hall.  
If you leave our room and walk straight ahead, you land in Anna Marie's room.  Anna and
Avalon instantly hit it off.  Anna is an "older" woman...she's "going to be 8 in just a few weeks,
you know.  I'm going to be 8 on  November 6th"  (always said with a lilting, charming GA
accent)  But no matter how far apart they
think they are, a 6 1/2 year old little girl has a lot in
common with an almost-8-year-old.  :-)

Better yet, their mothers also have a lot in common.  Who better to understand the frustration
of shunt failure, than someone whose daughter is also in it?  And pseudo tumor shunt failure
is totally different than hydrocephalus shunt failure.  The fact is, our kids live with severe pain
so often, they are champions at hiding it.  The clues are often so subtle even we miss them,
see Avalon as exhibit A.  She is losing sight and hearing her pressure is so high...and yet we
were questioning ourselves if it 'might' be high.  It has been nice to be able to vent last night
and today to someone who truly understands.  

For Avalon, the gift has been a friend that she doesn't have to explain things to.  Avalon is
always having to justify herself to other children.  
  I'm sorry, I can't run like that, it hurts.  Oh,
I'm sorry, I forget stuff, I'll try harder.  Go ahead without me, I have to sit for a while...  
With
Anna, there were no apologies necessary.  We explained to Anna that Avalon had a leak in
her back from an LP, so she had to stay flat.  Bing, bang, done.  No further explanation
needed.  How cool!  Anna's answer?  Find a way to play with Avalon on Avalon's terms.

At one point, little miss Anna Marie came walking into the room carrying an armful of games.  
She was determined to find one Avalon could play while laying down.  We ruled out Ants in
the Pants and another one, finally settling on "Trouble".  Due to Avalon's intense back pain,
she has adopted a "position" that she can tolerate, laying on her left side side, facing the
room's couch and window.  Anna Marie didn't question it, she simply took up residence on the
couch, asked if we could put the railing down so they could reach better, and set up the game
on the bed in front of Avalon.  

In a few minutes, a very sad, very hurt Avalon was giggling like she didn't have a care in the
world.  When Avalon's arm hurt too bad to push the dice popper, Anna did it for her.  Anna
helped her count, and together, they healed something in each other.  I have long held to the
belief that the love of a friend is worth more than medicine ever can be.  Tonight, I saw that.  I
saw two broken little girls find a way to help mend each other.  No need for explanations,
apologies, or words.  Two babes in pain morphed into two little girls....more than we moms
could have hoped for.  This will definitely be one of my most favorite lifetime memories...

May you all find your 'Anna'.  She can work miracles for your outlook on life....
Peeking in at the Wonder Twins from the hallway.  This is a great shot of the size of the
closet....ahem
room we live in at the hospital.  The bedside commode is because of the IV in
Avalon's foot, she can't walk.  I just pick her up from the bed and set her down.  On the
counter you can see the other games Anna Marie brought in.  I love that kid!