Friday 1-14-11 Day 11

Friday   1-14-11     Day 11

Sorry we didn't get any updates to you any sooner than this.  Thursday night in the PICU
and Friday during the day was very busy and so I never got a chance to sit down and update
the blog.

Overall, Alannah is doing very well post-op.  All her vitals are good, she passes all the
neurological testing every time, her blood work has been good for the most part, and the things
that were off were not off by much.  However, she has been in a bit of pain and very
uncomfortable from all the IV lines, the brain drain tube and foley catheter from the surgery,
also she has had some head pain from the surgery.  I would say that she was definately feeling
better Friday evening than Friday morning, so she is getting a little better as the day goes along. 
They were able to pull the foley catheter out, the brain drain tube is out, and the 2 extra IV
LINES are out....so all she has left is her beloved "Pickle, the PICC line".

Sidebar:  Some people have been asking what a PICC line is.  It's a form of IV line which is
longer than a typical IV access.  A typical IV has a short straw that sits in your vein and
allows for medications to go in.  It doesn't usually work well for blood withdrawal however,
so if you need to do blood work and you have a typical IV then you have to get stuck everytime
you need to give blood.  A PICC line has a very long straw that goes up your arm and all the
way to the central part of your body, near a bigger vein.  This allows for easier access for meds,
and also allows for blood withdrawal.  So, everytime Alannah needs to give blood for testing,
which has been up to 5 times per day, she doesn't need to get stuck.  They just draw it from
her PICC line.  They have to be very careful drawing blood and giving meds, b/c PICC lines get
infected easier than regular IV lines, but they have done an amazing job keeping it clean.

Thursday night, post surgery, was a little scary.  She ran a high temp of 104.5 degrees....again,
no one seemed to be super alarmed about it, most everyone said that high temps can happen post-op.
She had already had her Tylenol, and wasn't due for
another dose.....so all we could do was put ice packs around her and I layed cool clothes all over
her body every hour.  It worked!  And her temp came down to a safer number.  By Friday, it was
doing better and was more low key.  So things have calmed down a little bit....

The surgeon came and spoke to us today......he has ordered P.T. to help Alannah get back to her normal mobility since she has basically been bed bound for the past 10 days.  He says that if Alannah is doing well, she may go home as early as Monday.  We'll see....

Alannah was moved from the ICU to a regular post-op medical floor Friday night around 8pm...
yeah!  I liked the ICU, again we had great nurses, but there is something very NOT RELAXING
about the incessant beeping and screaming and lights there....amen to a quieter unit.

She no longer has to wear a big headwrap like before  ( see pics ).....she has some Telfa? gauze
laying on top of her incisions, which is being held in place by a mesh type stocking.  So her
head is not as hot since it can breathe better now.....and she fell right to sleep tonight...we are
praying for a quiet, restful night.....for her and for us.

I wanted to say a special thank you to everyone who has been bringing meals and beverages to
the hospital....Alannah, like most people, doesn't like the cafeteria food....so it has
been a blessing for her and with all the days we have been here, it would have been quite a
a large amount of money to spend for 3 meals a day for 3 people...and we truly appreciate
everyone's time and effort in preparing us home cooked or catered meals....some of the recent
meals were provided by:
Uncle Pete and Aunt Teresa made home-made lasagna and brought it Wednesday....I know the
nurses were jealous b/c they talked about it later!
Zizi Frank and Zizi Mary made breaded chicken, mashed potato and peas for Thursday...very
delicious.
And Aunt Elvira and Uncle Michael provided dinner from Juliano's Restaurant in Robinson for
Friday night....Love their tortellini!
And of course Grandma and Grandpa Porco are still providing lunch almost everyday...they
are relentless!!  In a good way!
**If I forgot to mention anyone who brought meals, forgive me and know that we appreciate
you too....it means a lot to us that so many people care.

Grandma Doris was able to travel into Pittsburgh from her hometown in Somerset county today!
Alannah was quite grumpy from all the above mentioned items, but we still had a nice visit...
Mommy was grumpy too but we won't talk about that!

Aunt Denise and Uncle Rick came to visit again and so did cousin Katie.  Katie brought an I SPY
book and another activity, which really distracted Alannah from her woes!!  Thanks Katie!  (Think
about working with kids in some capacity....maybe O.T..  YOU ARE GOOD at it!)

Since they were all visiting when Alannah was moved from ICU, everyone grabbed something and the move from ICU to current hospital room went very smoothly!  Thanks guys!

Well, that's enough for today....here are some pics.....

An hour or 2 post surgery # 2....no idea what that is on her face- Betadine?  I told her she looks like she has kitty cat whiskers....she didn't find that amusing

The day after surgery # 2

She sat in a chair for 1  and  1/2 hours.....very good for day after  brain surgery

Mesh hat after they pulled the "brain drain tube"

Cousin Katie

Uncle Rick

Aunt Denise

Activities with cousin Katie

Grandma Doris watches the fun!

Alannah, cousin Katie and Grandma Doris in Alannah's new room after the ICU

THURSDAY 1-13-11 AFTERNOON

GOOD NEWS....The neurologist came out to update us on the progress of the surgery.  She said that they took out the abnormal part of brain tissue, and then applied the electrodes to see if they could find anymore abnormal brain waves.  She said that they placed the electrodes all around the area and inside where they resected and even farther away from the site, and still found NO ABNORMAL brain waves.  This is good news, because it means that she will probably be cured.  There is no 100% guarantee, but the prognosis right now is good.  She may still have seizures for 3-4 months post-op because of the trauma to the brain from the surgery itself, and then we'll be able to determine if she'll be seizure free.  All we can do now is wait and see, and pray.  We want to thank everyone again for all the prayers, love and thoughts.  We'll update you further on her post-op progress either later this evening or tomorrow morning. 
Love, hugs and kisses.....Marilena and Eric

THURSDAY - 1-13-11 MORNING

ALANNAH is in the operating room this morning....today's the big day.  We are hoping that today is the day she gets cured.  She went in around 8:30am and they started the actual surgery at 10am.  We will keep you posted.....Keep praying.

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



1-11-11

Tuesday   1-11-11

Another uneventful day....no seizures thus far (8 pm ). 

Dr. Holder and Dr. Patterson did more "mapping", see yesterday's notes for details.

If Alannah has seizures in the middle of the night tonight, they may perform surgery later
in the morning tomorrow.  If not, then the surgery probably won't happen until Friday.

Zia Marianicola came today and brought lunch, with grandma and grandpa.  We had a nice visit.
Father John, our priest, came to visit this afternoon too.  We had a fun visit and he gave
Alannah a special blessing.

When Dr.Holder came in yesterday and saw Alannah's Steeler emblem on her headwrap, she was not
happy.  She is a Cleveland Browns fan, having grown up in Ohio.  So we had an interesting
conversation about how she lives in Pittsburgh now, and she probably shouldn't hate the
Steelers.  She doesn't agree.  I had the feeling that she is one of the very few, or maybe
the ONLY Cleveland Browns fan in this hospital.....so we decided to support her a bit and today
we asked one of the nurses to print off a Cleveland Browns pic for Alannah's headwrap
( she has requested to remain nameless - she doesn't want anyone to know
she printed a Cleveland Browns pic for a pittsburgher ).  We think Dr. Holder was happy with
Alannah's support, but we took a lot of flak from all the others who came into her room
today.  Alannah decided it was worth it for Dr. Holder.

Eric and I are tired, but we are happy that Alannah is well loved by family, friends and
all the people who come into contact with her.  We know that she is well taken care of here
and that makes the whole situation easier to handle.  I think once this is all done, and she
is well, Eric and I will probably sleep for a week straight.

Good night.

MONDAY - JAN 10, 2011

DAY 7  MONDAY   JANUARY 10, 2011

Well, today when Alannah woke up, I could see wires under the head wrap because she
had moved around so much in her sleep that she had worked some gauze up and off
the wrap.  I freaked out a little bit, but true to experienced nurse form, no one
else freaked out.  They just sent some people to re-wrap it....new headwrap pictures
to follow...

Bad night sleep again for Alannah, and of course, for the parents too.  She was itchy,
itchy, and more itchy under the headwrap.....so she got a dose of Benadryl to help with
that.  They informed us that it would probably make her sleepy, which we thought might
work out well since she hadn't been sleeping well.  However, Alannah never does anything
as they predict, so instead of getting sleepy, she was up for 3 hours....all you can
do is laugh....so go ahead, laugh.

They decided to do some "mapping" today, which means that they stimulate certain
electrodes in her brain to determine exact placement of electrodes over the "motor"
areas of  her brain.  This is the area of her brain which controls the muscles
that move the left side of her body. So when they do this stimulation, it moves her
hand or facial muscles.  They do this procedure to determine exact
location of motor areas of the brain, so that they don't remove or disturb this
part of the brain when they are removing the epileptic brain tissue.  It went very
well, and Alannah cooperated pleasantly, although, she didn't like it too much.
She said, after they left, that it was weird....

The surgery has definately been canceled for tomorrow.  She, as of today at 4pm, has
not had any seizures yet.  They have to see at least 3-4 seizures before they can
have all the information they need for the most successful surgery outcomes.  So we will
wait.....if she has any tonight or tomorrow morning, the surgery may be Wednesday....if not,
it may be Friday.  And if all else fails, it may even be pushed to next week.  We obviously
don't want to be here forever, but it is way more important that they have all the info they
need for the most successful outcomes.

Grandma and grandpa made their lunch run today....and brought Alannah one of her favorites:
McDonald's chicken nuggets.  She ate them all!  Uncle Ben and Aunt Mary also came today and
brought delicious dinner. They also got to experience Alannah's  new water gun....which
just happens to be an old saline syringe. She had a good old time trying to soak every one's
face! That thing can shoot pretty far!   ( see pics )   Aunt Denise and Uncle Rick came over
too, they did not get to escape the water gun either!  Alannah also played some games with
her visitors and of course, watched some movies.

The doctors have now ordered that Alannah be "sleep-deprived", which means she is only allowed
to sleep from 12am-6am, no naps.  They are doing this because sometimes, sleep deprivation
can cause seizures, and they are doing everything they can to bring the seizures on. Eric and I
were thrilled to hear that our already very short sleeping hours were going to be reduced
even further.  Eric and I take "shifts" at night.  One of us is always awake, watching her,
making sure that she doesn't yank off her headwrap or have a seizure that someone misses or
rolls over and konks her head on the bed rails.  Eric brought a laptop for us to use and
we use our "awake shift" to blog, or watch movies, or check email, etc. Sometimes we are
exhausted at the "changing of the shift" so we whine and complain about something trivial
and give each other dirty looks.....then we're over it. And then we usually laugh about
it later....usually.

Nurse Darla let Alannah play nurse and "give her an IV" which was a lot of fun.  They were
shooting "medicine" (aka saline water) into her IV.....which is of course how the whole water
gun thing started.  This is just another example of how the nurses go out of their way
to make Alannah feel good and have fun.....they are wonderful!  ( see pics )

I think that's all for today.....




THE OLD HEADWRAP....ABOUT READY TO FALL OFF!



NEW HEADWRAP WITH EVERY ONE'S FAVORITE TEAM EMBLEM!

DOING HER BREATHING EXERCISES

BEATING HER MOM AT A GOOD OLD GAME OF CANDYLAND

PLAYING NURSE WITH NURSE DARLA!

ALANNAH LOVES TO GIVE SHOTS TO SOMEONE ELSE!

ALANNAH PREPARING NURSE DARLA FOR HER I.V.

IT'S TIME FOR THE BIG PINCH!

AND NOW FOR YOUR MEDICINE!

ALANNAH HAS COLLECTED A TUBE OF "BLOOD" FROM NURSE DARLA

ALANNAH WORKING HER "WATER GUN" SYRINGE ON UNCLE BEN

AND AUNT MARY!

PLAYING TROUBLE WITH AUNT MARY

ONE OF THE NURSES MADE OUR PRINCESS A TIARA TODAY

Sunday - January 9, 2011

DAY 6   SUNDAY  JANUARY 9, 2011

marilena writes:

The second surgery may not happen Tuesday.  She hasn't had any seizures yet, and unless she has them
tonight or early tomorrow  morning, they won't have enough time to do everything prior to scheduled
surgery time on Tuesday.  Therefore, the surgery may be rescheduled to Wednesday or Friday. 

Eric went to the blood bank yesterday and donated some blood, because we found out that he is the same
blood type as Alannah.  And since she needed a blood transfusion during the 1st surgery, he decided to
go ahead and donate in case she would need blood products again.  He fainted at the site of his own blood....
ha ha, just kidding.  He's a tough old cookie.

Compare Chris came over today, and brought a special lunch from P.F. Chang's.  He stayed for a long while and
we had a nice time.  While he was there, Zizi Frank came to visit and he played Connect Four with Alannah.
He wanted a rematch with the farm game, but Alannah wasn't handing out rematches today.  She wanted to play
Connect Four (see the pics), and she told him where to put all his chips, so she won again!  Imagine that!

She was suppose to have an MRI today, but they canceled it because they didn't want to take the chance of missing
any seizures while she was at the MRI.  (because during the MRI they would have to unhook her from the monitor).
So MRI will be scheduled for a time after they record some seizures.

eric writes:

Nurse Kalani (yes, this is an Hawaiian name but she was born and rasied in the
'burgh.  Her parents were in the service and stationed in Hawaii for a while) is
back for another round tonight.  Tonight after Alannah washed up for bed, Kalani
sat down with her and talked about what was going to happen during the midnight
blood draw for her sodium level check. (See pics of Alannah wearing the gloves
and practicing on Kalani.)  She is hoping to avoid a repeat of
Alannah's performance from last night.......

[flashback to last night, queue the wavy screen effects]

.....Kalani came in around midnight to draw the blood for the sodium level check
and Alannah just freaked out.  She started to cry, whine and got herself so
worked up that she was up for about 2 and half hours.  After a little while,
Kalani came back in to try to help settle Alannah down.  Kalani sat on the bed
and helped Alannah hold her baby doll and finally got Alannah to sleep.  Kalani
got up from the bed and turned around to make sure Alannah was asleep, she raised
the bedside rail halfway and looked at Alannah to make sure she was still asleep,
she raised the rail all the way up and taking care not to make the locking
mechanism click and looked at Alannah to make sure she was still asleep, she went
to open the door and Alannah opened her eyes and said, "Where are you going?".  I
watched the whole thing from the other side of the bed and Alannah was sleeping.
Kalani told her she had to go check on the other kids she was looking after and
said she would be right back.  Alannah said "OK" and slowly drifted off to dream.

I tried to take some pics without the flash of her sleeping and holding her baby.
Alannah didn't sleep well the night before last and she skipped two days worth
of naps.  She has been taken off her anti-seizure meds in an effort to induce
some seizures so that the doctors can get the data to help with the second
surgery.  Typically, these meds are weened off and on.  Her body has been under
alot of stress from this little thing called brain surgery and this "hat" she has
to wear is really start to get to her.  It is so itchy that she wiggles her head
back and forth on the pillows and she has the thing so crooked that it looks like
she a one or two drinks too many.  she might be sporting a new head wrap tomorrow.
So, I guess she has a few legitimate reasons to freak out.  For a 5 year old, she
is holding up extremely well and deserves a "FREAK OUT" moment or two.

No fevers today, and sodium levels stayed stable.

Sleeping with bitty baby

"no,  not there, zizi frank.  put it in this row..."

Nurse Kalani teaches Alannah about cleaning her PICC line and lets Alannah practice on her elephant