Our
Journey:
Avalon's Army of Angels
October 28, 2009
PICC and the Supergirl!
Avalon got her PICC line today.  And today...she earned SuperStar status.  

The day was supposed to go like this.  Wake up, starve...because she was NPO (nothing by
mouth) after midnight.  We were going to take up time by taking our showers in the morning,
doing whatever we could to distract her.  Then, we would leave about 11:20 to get to the
Surgery unit by 12:00, for a 2 pm procedure.  At least, that's how the day was supposed to
work.  

At 9 am, the phone rang.  It was Children's, telling me they wanted to bump Avalon's
procedure to an earlier time.  OK, that's fine, I thought.  Then they drop the bomb, they want to
do her at
11:00 or 11:30!  What?!  By their own rules...that means she should have already
been at the hospital, not sitting on the couch in her pajamas complaining about being hungry.  
I told the caller that we might have a bit of an issue with that...but I'd do my best.  She said if I
could get there by 10 or 10:30, I should be fine.  What part of "we live 40 minutes away and
we're in our pajamas" did she miss?  

Well, folks, I am superwoman, hear me roar!  With Aurora's hair drying help, I got Avalon and I
in and out of the shower, dressed, to the hospital, and fully registered by 10:25.  Hah!  

In a few minutes we were back in our pre-op room and the ball was rolling.  The nurses knew
we were rushing things, so they had Avalon checked in with vitals, off to the ocean room for
her prize, and all ready to go by 10:45, it had to be a record.  They put the call in to
anesthesia, and we waited.  Then we waited some more...and more...and more.  Yep the
hurry-up-and-get-here club, was now in full stop mode.  Fabulous.

I could hear the nurses at the station.  They placed several phone calls to anesthesia.  They
also fielded several phone calls from Interventional Radiology...trying to explain the anesthesia
issue.  Eventually, a transport person showed up to move us, only to have me turn him away
because we hadn't seen anesthesia yet.  By 11:45, all of us were less than happy with the GA
team.  Brass tacks, I think IR bumped her up and no one cleared it with anesthesia.  Oops.  

Eventually, it was decided that anesthesia would meet us in Radiology.  Transport was called
back and we headed on downstairs.  Our new transport girl was a delight.  She loved Avalon's
decorated wheelchair and had fun chatting with us about decorations and costumes.  She had
a great sense of humor, and appreciated a ridiculous volunteer we came across.

As we got into one of the patient elevators, we joined two other staffers that were already in
there.  Now, the patient elevators are large, but you put 4 adults, a gurney and wheelchair in
one, and you're in for a tight squeeze.  However, this dorky, ancient volunteer decided he HAD
 to squeeze in with us.  Seriously, he could have waited...but oh no, he
had  to cram on.  That
was bad enough...but it was only the beginning.  When these particular elevators hit the first
floor, doors open on both sides.  One side empties into the main lobby behind the visitors'
receiving desk.  The other empties into a patient secret-ninja hallway, so gurneys can
manuever to MRI, Radiology, etc.  Well, Mr, Volunteer had crammed on the elevator
behind
me, the wheelchair, and the gurney.  

When we hit the first floor, the gurney, the wheelchair, and I all needed to exit to the rear. The
logical, thoughtful NOT STUPID thing to do, would have been for the volunteer to step off the
elevator, and allow the PATIENT and her 'movers' to exit.  Oh no...that would have been the
intelligent thing to do.  Mr. Volunteer was obviously not in possession of 1/2 of an ounce of
brains or thoughtfulness.  He
insisted  on shoving past us to leave through the other side of
the elevator.  "I have to go there!"   He was obviously irritated we were in
his  way...making
noise to that effect.   Honestly, it was so stupid/insensitive/RIDICULOUS...it was hysterical.  As
soon as the doors shut, the transport girl and I took one look at each other and burst into
giggles.  What the flyin' Hell?  Who is DORKY enough to shove past THE PATIENT...to make
sure they get off the elevator
first?!   AAAAACCCKK!!

As we wound our way through the secret-ninja back halls, transport and I were discussing the
elderly volunteers.  For the life of me, I can't figure most of them out.  They are NOT the sweet
Grandma types you would imagine.  Oh no, my friends, not even close.  The vast majority of
elderly volunteers I've run across in the past five years have been surly, cranky, and come off
as far closer to HATING children, than ever enjoying them.  I've been yelled at, ignored, and
on more than one occasion, shoved out of the way.  I asked the transport girl what she'd
experienced, and she agreed 100%.  She told me to feel lucky, they were actually
nicer to
parents than they were to employees.  Good grief, I can't imagine what the old hags say to
them!  

As we were continuing to giggle about
why on Earth do these cranky people volunteer?, we
exited the secret hallway, to cross the main hall into Radiology.  You won't believe who we had
to STOP for , to keep from running into...  Oh yeah, Mr. *&%$# Volunteer!  Not only did the
nasty old codger NOT have to get off the elevator the way he did...he made us move for him
again!!  Seriously, I think Ms. Transport and I nearly hurt something we laughed so hard....

When we got to IR, they were long since waiting on us.  When the Dr came out to greet Avalon
I couldn't have been happier, I know him.  Dr. Shiels is not only the head of the department,
he's incredibly good at what he does.  (In sharp CONTRAST to the butchering head of
neurosurgery...Voldemort, Voldemort, Voldemort)  Dr. Shiels also happens to be very nice and
an impressive innovater in his field.  He walked over, and I nearly danced.  

I apologized to him for being so tardy, explaining that we'd been held up waiting for anesthesia.
 He gave me that
I know, I'm irritated too look, and said, no problem.  Dr. Shiels then asked
why we were getting a PICC for pseudo tumor?  I explained the nightmare of last week, the
ONE IV access site we had left, and the 3 impending surgeries.  All of a sudden, he had an
odd look, and started to say something but stopped.  

With a little prodding, Dr. Shiels went on to ask if I thought there was any way Avalon could do
the PICC insertion without anesthesia.  He said he would never normally ask a child her age,
but that she's known to be really tough...and with her history, might find it pretty easy.  I said
"Let's ask her" and left the decision 100% up to her.  Dr. S and I explained everything
thoroughly and HONESTLY.  He told her he wouldn't lie, she would feel the needle with the
numbing medicine, and that the medicine hurt like crazy as it took effect, but that it would only
last for 15 seconds.  He promised her that she could stop if she couldn't tolerate things, and
that anesthesia could always come rescue her.  He was honest, direct, and very kid-friendly.  
We likened the pain aspects to things Avalon could process, and presented her with options.  
The deciding factor?  I told her that if she just 'did it', she would be able to eat as soon as she
was done.  No anesthesia meant no waiting for food.  As soon as I said that, she answered
with, "I'm in!"

Dr. S celebrated with her by putting on my witch hat and doing a quite memorable little jig.  
Once we got into the IR suite, he also produced the first bribe which was a beautiful ballerina
Barbie doll.  He had been wearing two little rubber skeletons in his scrub breast pocket, and
Avalon had admired them.  To keep her happy, he tucked one of them up in his scrubs hat, so
it could hang upside down and talk to her through the entire procedure.  The techs were
equally wonderful, chatting about all things little girl, and doing an amazing job of distracting
Avalon.  

Dr. S never did one thing that he didn't fully explain to Avalon.  Best of all, he described it in
terms that were perfect for her.  He was straightforward, and gave her credit for being a
knowledgeable medical child.  She was able to see the ultrasound of her veins as he chose
the vein he wanted, and then she was able to watch the x-ray as he guided the line into her
heart.  When the procedure was over and they were finishing up, Dr. S pointed to the x-ray
image and had Avalon identify what she could, then helped her see things like her shunt line.  
She amused them all when he pointed to her spine and asked if she knew what it was.  Her
answer?  "That's my spinal column!"  OK, seriously, what 6 yo calls it
that?  Backbone
yes...spinal column...not usually.  She gave them a good giggle.  

True to his word, the only really painful part of the procedure was the numbing.  Avalon did cry
and was in pain.  The staff did an excellent job of keeping her calm, counting down the 15
seconds, and praising her to the moon for working so hard to help them.  They told her 101
times that she was hands down the best patient they'd had in days...she really impressed
them.  
Truly the thing that bugged her the most was the drape they partially covered her face with.  It
bugged the beans out of her!  She wanted to see the monitors better.  Heck, she really wanted
to watch the entire insertion, but Dr. S did a fantastic job of explaining to her why she couldn't
breathe on her arm while he did it, he didn't want germies getting in there.  She complied, but
she really hated the drape.  When all was said and done, the first thing she bugged them
about was "can you take that thing off my face, please?"  They were all amused that's all she
had to complain about.  

Neurosurgery was kind enough to send down someone to pick up a blood sample from Avalon.
 That way, we don't have to make a special trip in to have Avalon's anti-coag pre-surgery labs
drawn.  Just one more example of how a little bit of thoughtfulness can go miles toward family
centered care.  Stupid current administration...if they got wind of that nicety...they'd probably
figure out a way to get the dept in trouble.  May they all rot someday....

After the procedure, Dr. S and the techs made a huge fuss over Avalon.  She left IR feeling
like a conquering queen!  She did something with ZERO drug help, that would terrify most
adults.  I admit, I'm totally IMPRESSED with her, and so proud I could pop.

We could have been discharged from IR, but we had to go back up to Surg Unit Recovery, to
meet up with home health care and get our PICC supplies.  That all ended up being rather
screwed up too...because of the 3 hour bump.  Home Health always has a tight schedule, and
again, no one had told them Avalon would be done so early.  I don't know how they managed
it, but they got there w/i the hour, a reasonably impressive feat.  Learning the new PICC/IV
system was easy, I was ready to go in about 2 minutes.  Cripes, it took longer to sign the
paperwork than to learn the new techniques.  No biggie.

The
joy of the day was the car ride home.  On the way to the hospital, the van's oil pressure
had dropped to zero...
twice.  Thankfully, it happened just as I got off the highway, but it was
still nerve wracking.  I hopped on the highway briefly on the way home, but after watching the
gauge like a hawk, thought better of it and got right back off.  I worked my way home on all
back roads, lest we end up as statistics on the side of the highway.  Sure enough, I had to pull
over and turn the car off TWICE,as the pressure was beginning to bottom out.  Oh yeah, it
has
to be fixed, we are out of options.   I'll be spending tomorrow trying to work all that out.  
Anybody win the lottery lately?  If so, please share your secrets, not real sure how we'll work
this out.  No paychecks in months...and two builders told Nick this morning that this won't be
the week either.  Damn.  

So, car disaster aside, it was a spectacular day!  Miss Avalon accomplished a near miracle.  
I'm so proud of her.  She's the toughest, most resiliant kid I know.  She amazes me nearly
constantly with her determination and pure heart.  I'm so lucky to have her, I'm so blessed to
get to be her mom.  

Ummmm....can you tell I'm a tad PROUD?!  Hee hee hee....
Following Nemo to the Ocean Room and a toy!
Changed into the icky pajamas.  Just waiting
on anesthesia to come.
One of the Interventional Radiology Suites.  I think these things look like something from a Star
Trek movie.  The first time I saw one, was through the wall of observation windows from the
"control" room.  They had weird lighting on, the whole room glowed.  Bonzo weird.
Back to our Pre-Op room in the Surgery Unit.  Yes, she's
dressed up.  Why not?  Might as well find the fun in Life!
The Ocean Room and treasures!
One fabulous radiologist...one AMAZING patient!