WEDNESDAY 1-12-11

Wednesday   1-12-11


New headwrap again today, third one.  The other one was tipping off to the right....see pics.
The doctors and nurses said this is the most they have ever done on a patient.
Alannah consistently participates in the wrapping after the incision has been wrapped.
She hands them the rolls of gauze that is used to wrap up the ribbons cables that
are attached to the computer and monitoring software.  At each wrapping since she
has been on the EMU floor everyone involved is so blown away on how receptive and
calm she is about the whole process.  That's our little "exception to the rule!"

Neurosurgeon is starting her on I.V. antibiotics as a preventative measure, since the grids
have been in for over a  week now.  Shortly after that decision was made, they found out she
was spiking a fever of 103 degrees.  They are treating it with Tylenol, and the IV antibiotics
they had already ordered for her.  Fever is not really what we wanted to hear...but they are
treating it, so we'll wait and see.

They are ready to operate any day this week....they have her on operating room schedule for tomorrow,
Friday, or even Saturday, if that's what it comes to.  They are obviously hoping for  as soon
as possible, and so are we.  Alannah is getting very frustrated with the whole business, but she
is still as tough as nails and hanging in there.

Well we had a very busy evening, MRI, urine specimen, chest x-ray and blood draws
to test the PICC line for any infection in an effort to find out what is causing
her temp to spike.

The MRI required Alannah to be disconnected from the monitoring attached to the
grids.  The grids and the leads coming out of the head are MRI safe but the things
that connect to the leads and the ribbon cables that run to the computer are not
MRI safe.  She was disconnected from monitoring for about 2 hours, we were concerned
she might seize while not on the monitoring and miss out on the data that everyone
wants to see from the seizure.  Good news on that front, there was no seizures
while disconnected.  Alannah ROCKED the MRI testing again!  No movie goggles and no
sedation needed.  This test was about 30 minutes, give or take a few.  A little
shorter than her previous hour plus marathon MRI before the first surgery but just
as important that she lay still.  These MRI pictures will be used to assist in the
second surgery for grid and depth electrode placements.

After the MRI, it was back up to the EMU floor to get reconnected and another half
a head wrap.  Only half because they only needed to remove the wrappings that held
the monitoring cables in place.  They left the incision site bandages and wrappings
in place and alone.  If anyone is keeping track, that is three and a half head
wraps in one week, unprecedented here at Children's.

Shortly after Alannah's head was wrapped, we were able to grab her urine sample to
send off for testing.  The mobile X-ray team showed up at her room and took a
chest X-ray.  The nurse then collected blood samples from the PICC line to be sent
to the lab for testing and she also pulled blood for sodium levels.

All these events brought us very close to the midnight hour so it wasn't hard to
keep Alannah up until midnight for her sleep deprivation, this is night number 3
and still no seizures!  She was still running a temp of 102.6, so she got some
Tylenol before bed, she also got her IV antibiotics and her IV drip in the event
we go to the OR tomorrow for the second surgery even though she hasn't had the
ever elusive seizure while attached to the monitoring equipment.

The doctors have quite a bit of information from monitoring the grids and they
have done the needed mapping with the grids.  With the information gathered so far
and the testing that has been done to date, there is enough data to perform the second
surgery but a couple of seizures would help to identify if there are any other
parts of the brain involved during a seizure or if the bad part is acting alone
and thereby increase the successfulness of the second surgery.

Be forewarned  before scrolling down to look at the pictures that we were able to
take some photos of Alannah's head during the re-wrapping from this
morning.  Some of the pictures from today show the incision and the leads coming
out of her head.  Just wanted to give everyone who is reading this a heads up
in case you are a little queasy about looking at these things.  If you want to
see, then you can scroll down through the following pics.

We'll keep everyone posted tomorrow on further surgery and/or fever details.

Looks like she had 1 too many!

Updated door pic



3rd headwrap