As of Saturday morning (now), Hannah has had seven obvious seizures, and even more seizure activity (tremors).  This has given the neurologists some information about where they are originating from.  Unfortunately it’s not good information. 

When the grid is placed on the surface of the brain, the hope is that the grid is placed over what is thought to be the area where seizures are originating from (based on previous testing).  Unfortunately, Hannah’s seizure activity appears to be originating from the top back corner of the grid.   What that means is that we can’t tell if what appears on the grid is the entire origination point.  It may go back further than where the grid has been placed.  So now the neurologists have given us three options…

Option #1: Remove Grid

Remove the grid and do not resect anything.  With this option, Hannah would continue to have seizures and future surgery would be more difficult due to scar tissue forming from this grid placement.  It’s hard to explain how hard it is on Hannah (and the whole family) to endure multiple seizures a day, so we’re not really prepared to consider this option (even this may eventually be our only option).

Option #2: Resect

Resect based on what we are seeing on the grid.  This was explained to us as putting a band-aid on the problem.  If we didn’t get the actual origination point, then resecting what we see would just cause the the abnormal electrical activity in her brain to travel another route and her seizures would still occur and just perhaps manifest differently. 

Option #3: Move the Grid

Perform surgery again to move the grid.  This would involve an additional surgery (and recovery) to go in and move the grid farther back so that the current origination area that they see is centered on the grid.  When our neurologist proposed this to the neurosurgeon, the neurosurgeon wanted to make sure the neurologist was confident in finding the origination point before going on another “fishing” trip.  Our neurologist seems confident that moving the grid will give a much clearer indication of the actual origination point of the seizures.

What to do?

None of these options are good, but we can’t even consider option 1 or 2, so we’re asking a lot of questions about option 3.  Like can a little girl endure four brain surgeries in a two week span? 

Thursday

Sorry, missed posting yesterday.  Day 3 was pretty much a progressive improvement in the ICU.  She started the day intubated and sedated, but after a CT scan that showed no more bleeding or internal swelling, they removed the breathing tube and took her off the sedatives.  She also ended up needing another unit of blood and a unit of platelets.

Throughout the day she slowly started communicating more (few words here and there), which all started with a thumbs up after Richard B. prayed for her.  She was even moving her bed up and down herself.

Since she had the second surgery later in the day Wednesday, they decided to keep her in ICU for another night (Thursday night).

At the beginning of the day, the neurologist stopped all her anti-seizure meds to try and ensure she’d start having some seizures to record.  Still no seizures by the end of the day though.

Friday

Most of Friday morning and afternoon was the same as Thursday.  Hannah is still getting Morphine for the pain and lying quietly in bed recovering.  She still has not eaten anything and has an upset stomach after drinking sips of juice.  She whispers a few words here and there, but doesn’t talk much more than that

She did get a lot of visitors today.  My team from work all visited her this afternoon.  We totally violated the visitor limit in the ICU, but it was nice having all of them down to pray together (thanks Cameron) for Hannah and support us through this.  That goes for everyone who has visited  Can’t believe some of you have made the drive down here multiple times.  It’s a long drive!  It means a lot to us.

Around 4:00pm they moved Hannah from the ICU to the Pediatric Epilepsy Monitoring Unit (PEMU).  Here she has a much bigger, much more private room.  Shortly after moving down here, she was able to get out of bed and sit in a chair for a couple minutes.

And, she has started having seizures again.  It’s almost Midnight, and she’s had three recorded seizures so far while in the PEMU.  Now we wonder (and hope) that the neurologist will start her back on the anti-seizure meds tomorrow so that she is not having too many of them.

Just wanted to let everyone know how much we appreciate your comments, emails, calls, visits, and especially all your prayers.  We may not respond to all of them, but wanted you to know we’re getting them all and how much we appreciate it.

Thank-you.

Sorry don’t have time to write too much.  Yesterday started off as expected.  Hannah was groggy from the morphine she was getting, but we could wake her when needed to have her do things like move her hands, feet, see and recognize people in the room.  Yesterday afternoon, though, just prior to moving her out of the ICU to her PEMU room, we couldn’t wake her.  After trying for a while, she was taken for a CT scan.  The CT scan showed bleeding/clotting around where the grid was placed that was putting pressure on her brain (which caused the unconsciousness) .  They quickly took her back to the O.R. room for surgery to relieve the pressure and stop the bleeding.  Surgery took about two hours and they did find a big clot on the surface of the grid.  They did not find an actual vein that was bleeding and could be stopped, they just described her as very “oozy”.  They did do some extra things this time to help stop the bleeding like putting a mesh over the grid, giving her vitamin K and using more paste to help stop the “oozing.” 

A CT Scan a couple hours after the surgery looked good, and she is going to have another scan this morning.  They also needed to give her a unit of blood.  They did keep her sedated and incubated all night.

You can also get updates at http://twitter.com/azturner

Today Hannah had the first of her two brain surgeries. The first surgery is to place electrodes directly on the surface of the brain so that the origin point of her seizures can be pin-pointed

Pre-Op

After arriving at Phoenix Children’s Hospital at  5:45 in the morning, we were admitted and taken to the prep area.  Here Hannah changed into the hospital “PJs”, and then there were a lot of questions, both for Hannah, and from Hannah.  She soon became quite anxious and began to cry about being scared of the operation.  But… they have a drug for this (they seem to have a drug for everything).  She was given some Versed to help with anxiety, which it did.  She quickly calmed down and became her cheerful self again.  After a few more minutes she was taken to the operating area…

The nurses told us that the Versed had an amnesiac effect and she wouldn’t remember anything we were talking about, so to test this I told Hannah that we’d increase her allowance to $100/week.  Well… the nurse lied!  As soon as Hannah started to wake up after the surgery, we asked her if she knew how much allowance she was going to get and sure enough, she mumbled “a 100 dollars.”

Surgery

The surgery went well.  The only comments the surgeon had was that she was “oozy,” meaning she bleed a little more than usual and they needed to do some extra work to clot the bleeding.  The were able to place a large grid of electrodes on the left frontal lobe, and also were able to put a strip of electrodes on the back side of the left frontal lobe in the area between the left and right hemisphere.

Recovery

About noon we were able to join her in the ICU.  She has been given Morphine several times to help the pain, and it keeps her pretty sedated.  The swelling has also started on her head and the left side of her face.  She can’t really open her left eye.

She is able to talk though (a couple words or a sentence here and there between sleeping), and she’s able to move everything, which means the swelling inside isn’t affecting any of that.

She’s had several visitors today (Family and a few friends from church\work).  Her most special visitor was Sam though.  Sam has never been able to visit her before (RSV restrictions limited visitors to those over 12).

Prayer Request

Our prayer for today is that she can be moved from the ICU area to the Pediatric Epilepsy Monitoring Unit (PEMU), and that she has some seizures that can be recorded to pinpoint their origin.

Today was a good day.  We went to Phoenix Children’s Hospital for Hannah to get some blood tests done (just to ensure she doesn’t have any type of infection prior to surgery tomorrow).  It was a painless experience for her, as they actually are able to numb her skin prior to the needle, so she didn’t feel a thing, as you can tell from her happy expression.

After the blood test, the nurse asked if we wanted a tour of the pre-op and ICU areas which was great, as it gave us a chance to get a lot of our questions answered.  When she showed us the entrance to the operating area and explained that the red line on the floor meant that you had to be “clean” in order to pass it, Hannah informed us that she was going to go roll in mud and wasn’t going to shower tonight .

After the hospital, we had lunch at Spaghetti Factory, played a long game of Monopoly, and then some Halo 3.  All some of her favorite pastimes.  And… she only had a three seizures.  It was a good day.

Thank-you to all of you that are praying for her.  It means a lot to us and to Hannah that you are praying for her.

Now, we just need to get up at 4:00 am tomorrow in order to be at the hospital by 5:45.

Hannah’s first surgery is tomorrow. If you’re the praying sort, would you please be praying for her?  Specifically that…

1. Both surgeries go well without complications like infection, stroke, etc.
2. The grid placement shows a clear and distinct point of seizure origin and that it is in an area that can be removed (resected).
3. The resection does not cause any loss of movement (paralysis) or any other loss of function (intellect, memory, emotion).
4. The resection cures the seizures.

We’ll also be posting here (and twittering) during her stay at the hospital (and afterwards), to let you know how she’s doing and any other specific prayer needs.

Thanks for praying for her.  It means a lot to us, and Hannah is encouraged to know so many people are praying.  If you leave a comment, we’ll pass it on to her. 

Hannah’s brain surgery is now less than a week away.  Here’s some of the details…

Day Before (July 27th)

On Monday we have to be at the hospital at 9:30 so Hannah can have some blood tests done.  This is to make sure she doesn’t have any type of infection going into surgery.

After the hospital, we’re taking her to The Spaghetti Factory for lunch, which is one of her favorite places to eat.

Craniotomy

On Tuesday, July 28th, we’re supposed to arrive at the hospital at 6:00 in the morning. After she’s admitted, she’ll go to a surgery prep area, and be given some medication to relax her in preparation for anesthesia.  Then she’s put to sleep, but we’re not sure if that will be in the prep area with us, or after she goes into the operating area.  The surgeon did tell us that things like the IV, clipping of the hair, catheter, etc. will be done after she’s asleep so she doesn’t have to worry about those things.

The first operation is the craniotomy and grid placement and will take about 3-4 hours.  This involves opening her skull over the left frontal lobe, and placing electrodes directly on the surface of her brain.  (if you’re brave enough to look, here are some images of a subdural grid placement: image1, image2).  The surgeon said he would give us progress reports about every hour on how things were going.

Once the surgery has been completed, she will be moved to the ICU area, where we will join her.  They will keep her overnight in the ICU for monitoring of things like infection, vitals, etc.  They hope to have her eating, drinking and sitting up by the next day.

The surgeon said that typically there is a lot of pain and swelling of the head and left eye after this first operation, and they will be administering morphine to help alleviate the pain.

PEMU

After the ICU, as long as her vitals are looking good, she will be moved to the Pediatric Epilepsy Monitoring Unit (PEMU).  This is where they’ll “plug” her in.  The wires coming from the electrodes in her head will be hooked up to the computer for monitoring of electrical activity, and they will video tape her the entire time.  This will probably last two or three days, long enough to record substantial data during several seizures.  The idea is to try and further pinpoint where the seizures are originating from.  They also may send electrical activity to the grid in her head and see what happens (see what moves).

Decision Time

After the monitoring, we will meet with our neurologist to discuss if they were able to isolate more where the seizures are originating from and if a resection (removal) of that area can be done.  It’s possible that the origination point of the seizures is too close to the areas in her brain responsible for movement and that the risk of paralysis is too high for continuing with the resection.

Resection

The second surgery would involve opening up the incision again, removing the electrodes, and doing a resection on as large a portion of her left frontal lobe as they feel is safe to do.  The success rate of eliminating seizures is higher when they are more aggressive with the removal (sorry “resection”).

After the second surgery she goes back to the ICU overnight and then to a normal hospital room for recovery.

Recovery

After the second surgery, it is typically three or four days of recovery in the hospital before going home.  Once home, it’s about two weeks before she can do things like school, etc.