April 27, 2005
Avalon surgery update
Good morning one and all!

Avalon had surgery to remove her port yesterday at about 11:30 a.m.  Prior to surgery, she
required a blood transfusion, so again - I wish to point out the importance of blood and
platelet donation to the survival of cancer kids.

Avalon's surgery presented information that has changed the expected course of treatment.  
The surgeon told our attending that the sight around the port showed serious signs of
infection, so she "packed" the wound rather than closing it.  "Packing" is the medical term for
stuffing gauze and medicine into a wound site, and leaving it open.  By packing a wound, you
leave it available for repeated applications of antibiotics, thereby truly healing an infected
site.  This, however, throws several new issues our way.  

First...ick!  Avalon has a gaping hole in her chest that we have to wait to heal closed on its
own, rather that sewing it shut.  Second...super ick!!  We have to learn to change the
dressing and packing at home.  Oh, I just really can't wait for that one.  Third...collasal ick!!!  
Until the wound is 100% healed and the bacteria 100% no-doubt-at-all gone...Avalon will
have to have a PIC line put in to receive her chemo, fluids, meds, etc.  

And why is a PIC line a yuck?  Because its a catheter that remains external at all times, rather
than her SIP port, which is under her skin and basically "invisible" unless she's accessed.  A
PIC line (
Percutaneous Intravenous Catheter) is a long, flexible tube inserted into a large
vein, usually near the elbow. The tube (medically speaking, all tubes are called catheters) is
threaded up the vein until its tip reaches the large veins inside the chest. PIC lines function
the same as our SIP, but they require more work at home, and scare the socks off of me in
terms of trying to keep the site clean and dry on a toddler that I can't explain its delicacy to.  

As if all of that wasn't enough of a wrinkle in our little "plan", Avalon developed a new problem
yesterday.  She began "flushing".  She would suddenly turn bright red and her face would
swell.  The first two times, it happened while she was lying down, nursing.  The very first time,
she had been nursing, considering going to sleep...so I had closed my eyes and played
'possum, to try to convince her to close hers.  I waited about 10 minutes (I gauged my time by
the Rugrats episode on TV...yes, I've seen them too much!) - and re-opened my eyes.  Not
only was she wide awake - but she was bright red!  I freaked, called the nurse - and then she
came in and freaked.  She had the intern in that room in 60 seconds - tops.  They had
Benadryl in Avalon's IV within another minute.  They hussled more than I thought possible.  

They took her Blood Pressure and temp immediately, and for every 15 minutes afterwards,
with never any outstanding outcomes.  We chalked it up to a possible post-anesthesia
reaction, and determined to discuss it with the attending and fellow when we saw them.  We
saw them sooner, rather than later, when she did it again a few hours later.  She repeated
the incident again even later, much to our chagrin.  Basically, no one is sure what's going on.
 We discussed it being a potential anesthesia reaction, a side affect of her Vancomycin, or a
combination of the two.  Last night they began giving her Benadryl 1/2 hour before Vanco
doses, and increasing Vanco infusion time from 1 hour to 2 hours - and that seemed to help.  
We'll see what today brings.

Unfortunately, her day is not starting out well.  (
I spent the night at home last night, so I'm
able to actually report all of this to you in a timely manner for once.
)  Even though Avalon's
port is gone, she must still be able to receive IV fluids and medicine.  Since her PIC won't be
placed until her blood cultures are clear, they had to put in a regular IV like any normal
patient would have.  The problem is, Avalon has a horrid history with IV's.  You may
remember hours worth of torturous stabs during her diagnosis week.  Literally, every IV team
in the hospital tried to access her that week, most with disastrous results.  Luckily, the IV was
placed yesterday while she was under anesthesia.  Unluckily, it has already failed.  At 4 a.m.,
the nurses couldn't do the blood draw.  They had tried repeatedly by the time I spoke with
Nick at 7 a.m, and have now given up.  They're waiting for the IV team this morning...  I'm
heartsick, worried about how many sticks she'll end up with this time...

All of this has changed our game plan considerably.  Now, Avalon will be coming home with a
PIC line and an open wound.  The wound may take some time to heal because her white
counts are doing their typical post-chemo nose-dive.  While her counts are low, her healing
process is severely impaired, slowing down our quest for a new port.  Once she is healed,
we'll head back to the hospital to get her new port.  Good news is, we get to come home in
between.  Bad news is, I'm a paranoid wreck about getting a new infection in the mean time.  
Hey, let's just add another notch to the stress belt...

That's where we stand right now.  Avalon is awaiting the IV team and all of their torture, and
Nick and I are awaiting the surgical team to teach us how to clean out her chest, and
eventually take care of her new line.  Skippy....  I can assure you, I'd much rather be awaiting
a margarita...but I suppose that's for another day...

Again, I want to thank all of you for your love and support.  We'd never make it through this
without you!

Love and hugs to ALL of you,
Alicia, Nick, Aurora, Ambrosia, and
Our Journey:
Avalon's Army of Angels