AUGUST 2011 FOLLOW-UP / EEG TEST

Alannah is 7 months post-surgery now.  On August 10, 2011, she had a 24 hour video EEG at Children's Hospital.  For those of you that don't already know, an EEG is a test where they glue electrodes to your head in specific areas.  These electrodes then record the electrical activity in your brain.  This test is used to determine if there is any seizure activity happening, and if so, where and how much is happening.

We arrived on Wednesday at 9:00am and they admitted her for the test.  Then she was brought up to her room on the EEG-Epilepsy unit at Children's.  They then glued all the electrodes to her head, which she hated because the glue stinks. [pics to follow at the bottom]  She made sure they were aware that she was unhappy about the smell!  Then they "plugged her in" to the monitor, and that's it!  She was pretty much tethered to the bed for 24 hours, but she could walk around the bed a little.  She watched movies, played games, and colored with the nurses, me and Eric.  We stayed until Thursday morning, when they took all the electrodes off, and then we came home.

The neurologist was suppose to read the EEG results on Thursday and call us with the news, but she unexpectedly had to go out of town for the weekend, starting Thursday!!  So, we had to wait until Monday for her to read the test and give us the results.....it was a very nerve-racking 4 days....to say the least.  But we love and trust her doctor implicitly  and didn't want anyone else to read the test results, so it was worth the wait. 

Her doctors' nurse called us late in the day Monday to deliver the good news!!  The test showed no seizure activity at all!!!  They didn't see any abnormal electrical activity!!!   Needless to say, I cried many, many tears of joy....we are so happy and so grateful to so many people.  First and foremost, God.  Not just for the excellent test result, but for getting her and us through the last very hard 17 months. And then we are so thankful to her neurologist, and the neurosurgeon and all the nurses and staff at Children's for essentially saving our daughter's life ( and putting up with me and my ten thousand questions!!) .  We can never repay them for that most precious gift.  And also thanks to all of our family and friends who provided never ending support and love through the whole process.

It's not quite over yet,though.  She has to continue taking the anti-seizure meds for a full year post-op, which means through Jan-Feb 2012.  It is their protocol to keep them on the meds for that long, because the brain can "re-learn" the seizure activity.  Research has shown that it is less likely for the brain to re-learn the old seizure activity if they keep them on meds for 1 full year.  We are of course praying that this "re-learning" does not happen!!  But only time will tell.  In Jan-Feb, she will have another EEG to confirm these test results, and also she will have another visit with the neurologist and neurosurgeon.  Then they will decide when to start weaning her off her meds, if that is possible.

This whole process has taught us a alot about ourselves and about epilepsy and how much it can limit someone's life.  We have decided to try and help other people with epilepsy by raising funds for The Epilepsy Foundation.  The Epilepsy Foundation uses their money to fund research for surgical procedures, like the one Alannah had, and also to fund research for new and better meds for epilepsy control.  They also create and help to pass laws which are aimed at preventing discrimination against people with epilepsy in the workplace and in schools.  This is a link to their website and description of their foundation: http://www.epilepsyfoundation.org/aboutus/

Bella already started by working a lemonade stand all summer, and was able to raise $ 504.08.  God-willing, in March 2012, Eric and the girls and I are going to Washington DC to participate in The Walk for Epilepsy.  We are planning to investigate how the whole "WALK" works, and then hope to start a team, in Alannah's honor, for coming years.  We hope that some or all of you will be willing to stand and/or "walk" with us for Alannah and for all the other children and adults who have dealt with, or are continuing to deal with epilepsy and its effects.

The Epilepsy Foundation's motto is "Not another moment lost to seizures".  We sincerely hope that one day, this motto could be true for all people who have been diagnosed with epilepsy.

EEG tech, Donna, applying electrodes to Alannah's head

 

Unhappy, "that glue stinks!!"

Happy again!

The queen with her remote!

Marilyn, the funny nurse from January, came back to color with Alannah again!

3 Month Follow-up Post Surgery

Hello everyone,

Alannah had her 3 month follow-up with the neurosurgeon and neurologist physician assistant yesterday, Thursday, 4/28/11.

First, she had an MRI so that they could have images of where they resected part of her right frontal lobe to see if that has healed the way they expected it to, and to make sure that nothing abnormal had happened in the healing process.

The neurosurgeon said everything looks good on the MRI.  The area where they removed brain tissue has filled with fluid, which is what was suppose to happen and he saw nothing abnormal on the MRI.  GOOD NEWS!

He informed us that since it has been 3 months since the surgery, that the skull bone where they had to cut is healed pretty solid at this point.  He also reminded us that it would be a full year before she could withstand anything like sports or anything high impact.  Bottom line:  Don't let her do anything where she could fall and hit her head really hard, such as climbing a jungle gym, riding a bike without a helmet, etc....otherwise, she's clear to get out and about and is going back to preschool next week to finish out the year with her classmates!! 

She does not need to see the neurosurgeon again until 1 year post surgery, which will be January 2012!

She has continued to remain seizure-free ( Thank God ) and will continue on with Keppra, her anti seizure med for 1 year post-op, b/c that is their protocol.

In August sometime, which is 7 months post-op, she will have a 24 hour video EEG.  That means she'll go into the hospital in the morning, they will attach numerous leads to her scalp ( with special glue ) and then they will plug her into a monitor, which will record her electrical brain activity.  They will admit her to the video unit ( which means they video tape her during her stay ) for that day and overnight and she will be able to leave the next morning.  When we leave the unit the next morning, we will go directly to an appointment with her neurologist, who will be able to tell us if they see any abnormal ( epileptic ) brain waves on the EEG.  Of course, this will be big news, either way.  So we are anxious to see what happens, and we will keep praying that the news continues to be good news. 

Below I have posted pictures from when we first got home after the surgery in January, through March 2011.  You will be able to see how much her hair has grown over the incision area and almost all of the dissolvable (is that a word?) stitches have fallen off. 



This was almost immediately after we got home - You can see how the incision is lifted, running along the top of her head.......that was some funky hair-do!



Getting back to guitar practice, she remembered everything!

February - you could still see the holes on the top of her head where the wires went in, and she still had her stitches but they are too small for you to see in this picture, and the incision has flattened down alot at this point ( I have such a way with words....sorry! )

March - hair covers almost everything

Playing with her cousins who came to visit from Tennessee - Kaci and Zachary

And we started to put her back to work! haha

All in all, everything is coming along really well at this point, and we will continue to pray, and hope that all of you will continue to pray, for her to continue to heal and to enjoy life to its fullest potential.

Love, Marilena and Eric

First follow up visit post surgery

Alannah's first follow up visit post surgery was Monday, 1-24-11.

It went pretty well.  The neuro team is happy with how the incision looks, her activity level, and her appetite.  They are also happy with the fact that she has not had any seizures (Thank you God).

The only thing she has to have looked at in February is a swollen lymph node/gland in her neck on the right side, the same side as the surgery.  She had this inpatient, then it went away.  An ear/nose/throat doctor looked at it while she was inpatient, but never had to do anything about it b/c it went away.  Well, it came back last week, so the neurosurgeon wants us to have ENT doctor look at it again.  So she has an appointment the 2nd week of Feb, to have it looked at.  It doesn't hurt her and it may just be part of the healing process, but he wants it looked at just to be sure.

Other updates:

The skull bone will take 3 months to heal solid.  It is being held in place by a plate and screws which will stay in forever, and as per the neurosurgeon, will not affect her ability to do anything in life.  He said if she wanted to play football, she'd have to wait for a whole year post-surgery.....Here's to hoping she never really wants to play football, because I am already getting gray-haired pretty quickly!  The plate and screws are even MRI safe.

In fact, her next follow up with both the surgeon and the neurologist is in 3 months, and she will  have had an MRI by the time she sees them.  She will be on anti-seizure meds for a whole year post-surgery, that is their protocol after this surgery.

At 6 months, the neurologist will see her again.  At this point, she will have an EEG, which is a test that measures electrical brain activity.  They will be looking for any abnormal brain waves......hopefully, they won't find any.

Then, at 1 year, if the EEG is normal and she still hasn't had any seizures, they will talk about weaning her off the seizure meds for good.

That's the plan for now.....

I will keep you all posted after the multiple visits over the next year.....if I forget to blog....call me.   Teresa, thanks for the reminder for this one.

GO STEELERS!   ( Sorry, Dr. Holder)

SHE'S HOME !!!

Sorry it took me so long to update the blog.  We came home on Monday, 1-17-11.  Since we've been home, we have been very busy getting acclimated to being home again. 

She is doing very well, the incision looks good, her appetite is picking up now that she's home, and her balance is steadily improving each day.

She's very annoyed with us sometimes because we constantly have to guard her from falling and bumping her head.....which is very annoying and limiting for her ( and us ) but it's in her best interests.  Hopefully, that part we'll only need to worry about for 6-8 weeks, until the skull heals.  We have to watch her for seizure activity too, because they informed us that she could have seizures post-op just from the surgery itself, for up to 3 months.  Thank God above, none so far.  I was saying that to someone today and she overheard me say she hadn't had any seizures yet.....and her response was "Mom ( in a very sarcastic tone ), That's why I had the surgery....."  You could almost hear the "Duh", but she didn't actually say it....you could see it her eyes though!

Overall, things are going well and we are very blessed because she is acting more and more like herself everyday.  She still has some recovery time to go, but she's well on her way.

The next update will be after her follow-up appointments on Monday, 1-24-11, with the neurologist and neurosurgeon.

Thanks, for the hundredth time, for everyone's love and concern.

SUNDAY 1-16-11 EVENING

Well, Alannah has continued to improve today.  She has been eating a little more and walking a little more and being more and more sassy as the day goes on.....all very good news!

The plan is still for us to go home tomorrow......and we are very excited about that. 

She has not been wearing her mesh hat at all today....I wanted to wash the hat and the doctors said to leave the incision open to air and to wash her hair tomorrow.  If you scroll down, you'll see pics of the incision now that it is closed up.

Update on move home will be tomorrow evening.

PICS:

Sunday - 1-16-11 - morning

The hat came  off today.....she feels great with the hat off....I am a little nervous because I am afraid something will get on her incision.  Apparently I am just an over-anxious mother (which I am sure is a big surprise to none of you )  because the doctors say it's better to leave the incision open to air most of the day, it will help it heal faster.  Plus they told us it is "Water-proof" after 48 hours. 

As of right now, if nothing else changes, she is going home tomorrow.  SHE IS VERY HAPPY ABOUT THAT....SHE WANTED TO GO HOME YESTERDAY! 

She is acting a little more energetic today and eating a shade better than yesterday...she still gets tired very easily but that is to be expected and will probably be the norm for some time yet.

More later..................

Saturday 1-15-11 Day 12

Saturday  1-15-11    Day  12

Marilena:

Well, the real Alannah is starting to come back today.  She is demonstrating more energy,
more of her usual spunk, and we are so happy about that.  She still has a little way to
go, because she is walking a little off balance right now and gets tired very easily. 
And her appetite is definitely not where it needs to be yet....but overall, I see definite
progress from yesterday.

Aunt Denise, Uncle Rick and Grandma Doris came this afternoon and brought a big lunch/dinner.
Chicken bacon roll-ups, rice and broccoli, with brownies for dessert.  Yum.  Aunt Denise also
brought snow for Alannah to play with....yes, snow.  It's some kind of powder that becomes like
snow when you add water to it.  see pics.  They had a good time...Alannah tried to fling it at
Aunt Denise a few times but Aunt Denise laid down the law.  ( Although it was good to see
Alannah being mischievous again! )

Big sister Bella came to visit today and she wants to add a statement to the blog, so here she is:

Bella:

Hi! Yes I really am writing on the blog. Today I'm visiting with mom, dad, and Alannah. I'm really happy
and excited to be here with them. I miss being at home, with them, and with them at home! Alannah is
doing so much better. She looks really good too. She's also excited that I'm here with her.I also played with
the snow with her and we had tons of fun.

Marilena:

We miss Bella too.....it looks like we may go home soon if Alannah's blood work continues to improve
and if she begins to demonstrate a better appetite and better balance.  The doctors are talking about
Monday being our potential "go home" day.  It will be a little bit scary, but very exciting to get home.

Grandma and grandpa brought dinner from Aunt Mary and Uncle Ben again....they made sausage today so
we got fresh sausage and pasta for dinner, among other things.  They also brought coffee and some
of Uncle Ben's birthday cake.....Happy Birthday Uncle Ben!

Alannah had physical therapy today, and they walked around the unit and did some steps.  Eric and I have
been holding onto Alannah when she walks because she is off  balance, and the P.T. did too at first, but then
she let Alannah walk with just contact guard, meaning she was hovering around her but not holding onto her.
Her balance was still off, and she was weaving like maybe she had a special drink at lunch, but she held her
own.  Overall, she did a good job.

The neurosurgeon on call came to see Alannah today and removed the gauze from the incision, stating that
they need it to be open to air now. So all Alannah has on is the mesh cap to keep her from picking at it.
She informed us that the incisions are "water-proof" within 48 hours,
which I thought was amazing.  So technically, Alannah could have taken a shower today, but she said
to play it safe and wait until tomorrow.  I am  a little anxious about rushing that procedure, so we
may wait an extra day or two.....I don't want to take any chances after all she has been through.

We are so happy with her progress and continue to pray for her to have a happy and fulfilling life.
I believe that God has brought us to this point, and He will continue to protect and love her.
Thanks to all who are supporting us and praying to Him for her.

The Enfields

P.S.    Thanks to Ms. Deb, Ms. Bev, and Ms, Casey (did I get those names right Denise?)  - the people Denise works with who provided the "snow"....Alannah really enjoyed it.



ALANNAH GETTING SOME OF HER SPUNK BACK....DOING HER KARATE KID MOVIE MOVES



ALANNAH WITH HER "ELF" MESH HAT

BIG SISTER BELLA CHECKING OUT THE ELF HAT

ALANNAH SAT ON THE COUCH TODAY WITH GRANDMA DORIS AND AUNT DENISE

ALANNAH PLAYING WITH A BUCKET OF "SNOW" AND COLORFUL WORMS

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