Similar to a pacemaker, a vagus nerve stimulator (VNS) is a small device implanted under the skin near your collarbone. A wire (lead) under the skin connects the device to the vagus nerve in your neck. The doctor programs the device to produce weak electrical signals that travel along the vagus nerve to your brain at regular intervals. These signals help prevent the electrical bursts in the brain that cause seizures.

Hannah will also have a magnet that she can use to turn on the device whenever she feels a seizure coming. 

Please pray that the surgery goes well (She’s in good hands, and it is an outpatient surgery so it should), and that this device will give her some sort of relief.

When we told her this morning (yep, we waited until the last minute) about the surgery, she was very disappointed that she was going to miss school.

Those of you who know Hannah, know how much of a social creature she is.  We hated the idea of her being homebound in front of a computer every day with no social outlet.  On the flipside though, we couldn’t imagine her sitting in a normal classroom with her seizures.  Before giving up on the normal classroom though, we asked the principal at Mountain View if we could at least meet with him and Hannah’ new teacher to discuss the possibility of her actually attending.

A few days later we walked into a meeting at the school expecting to see just the principal and teacher.  We were surprised to also see the school nurse, the resource coordinator, and the school psychologist.  A whole team had been assembled to discuss Hannah’s situation and her needs for attending Mountain View.  This team is now trying to get a health aide approved through the district who would be with Hannah at all times.  This process unfortunately takes a couple months, so in the mean time, the principal has graciously allocated one of his staff members to be with Hannah temporarily until an official health aide can be approved.  What an amazing answer to prayer for us.  Thank you Mountain View, and thank you Mr. Knorr.

Hannah started school last week. She attended just a couple hours each day and mostly did testing with the resource coordinator, and with the physical and occupational therapists. This week though, she is in her normal class room.  She has an amazing aide and a teacher who are really looking out for as she transitions back to the class room. 

Tonight, Hannah said “I’m actually looking forward to school tomorrow.” 

In those last few days, it also became clear how much Hannah had touched those helping her. Our lead EEG tech, Esparanza, brought her a wrapped gift on Friday, and kept stopping by to visit Hannah long after she required any “EEG” type help.  Our neurosurgeon’s head nurse during a chance meeting in the cafeteria shared (through a lot of emotion) how disappointed she (and our neurosurgeon) were that Hannah had gone through so much and in the end they weren’t able to help her.  It meant a lot to us to see so many people care for Hannah as more than a patient.  Of course, she has that affect wherever she goes.

Hannah was finally able to leave the hospital on Saturday afternoon, and as soon as she got in the car she said “I’m so glad to get out of this place.”

What’s so Funny?

When we got home, we set up camp for her on the couch and she opened a few cards.  One of the cards (click the link and then click “take a listen”) from her cousin really struck her funny bone.  She just kept opening the card and giggling.  It was good to see her laughing again.

Something to be Proud of

On Sunday we were able to remove her bandages, and she was able to take a shower for the first time in two weeks.  We washed her hair as best as we could, but that sterile “goo” that they put everywhere during surgery was very difficult to get out.  There was  lot of combing and brushing (and some cutting) after the shower to untangle her hair. On Monday after the second washing, Jan asked her if she’d like us to style her hair to hide the scar and the shaved area, she replied, “No… seeing it  makes me feel proud of the four brain surgeries I went through.”

Hannah was taken into surgery about 8:30 this morning to remove the grids of electrodes.  Even though she was having brain surgery, her biggest concern was the Foley catheter.  After having had a catheter removed three times in the last week, she was adamant about not having one for this procedure.  Fortunately her anesthesiologist and her surgeon accommodated her request and worked together so that she wouldn’t need it.

While we were waiting in the surgery waiting area, we talked quite a bit with Hannah’s chief neurologist.  He conveyed how much Hannah has touched the entire team of neurologists, neurosurgeons, residents, EEG techs, nurses, etc., and how disappointed they all were that surgery wasn’t an option for her.  They’ve all come to care a great deal about Hannah in more than a doctor-patient way.

Surgery went well, and the grids were removed without any complications. We joined her in the PICU about noon.  Once again she made a quick recovery, and was soon watching TV, eating, drinking, and talking a lot.

Seizures

In the early afternoon though, she had a seizure.  Then shortly after that, she had another.  Then she started asking questions about her surgery.  We started to explain how the doctors discovered her seizures were starting in the same area of her brain as where her muscles moved yesterday during the mapping.  She quickly figured things out and interrupted us with “so I can’t have MY brain surgery?” (meaning the surgery to remove the “bad” part of her brain).  When we confirmed this, she began to cry.  Then shortly after that she had another seizure, and then continued to have them throughout the afternoon and evening.  After one of the seizures, she said between tears “I can’t take my seizures anymore.”  As of 11:00 pm, she has had eight seizures.

Technically, her seizures are classified as “Simple Partial” seizures. “Simple” because she does not lose consciousness, and “partial” because it originates in one hemisphere of the brain.  But, when you witness her seizures, there is nothing “simple” or “partial” about them.  Her legs and arms and hands suddenly stiffen up, her face becomes contorted, her body starts jerking, and she makes unusual guttural sounds.  This usually lasts about 20-30 seconds, and is then followed by an increased emotional state of a minute or two (usually sobbing). Afterwards, she is physically and emotionally drained.  Especially if she’s had several in a row.

Prayer Request

Hannah needs a lot of prayer.  Please pray for her to have the strength to endure.  That she not be continuously discouraged or feel hopeless.

Thanks,
Mom & Dad

At the end of the day, our neurologist and neurosurgeon confirmed that surgery would not be an option to cure her epilepsy.  There was just way to much overlap between the onset of her seizures and the motor and sensation areas of her brain.

Hannah is scheduled for surgery tomorrow morning at 8:30 to remove the grids.  Our neurosurgeon did discuss the vagus nerve stimulator with us, but he doesn’t want to implant it tomorrow for fear of an increased chance of infection.  So we’ll wait 4-6 weeks before implanting it.

On the less clinical side of things, Hannah had a good day.  She ate a lot, had some more visitors, etc.  Here’s a few pictures…

This means the ictal onset zone is very large.  It includes the motor strip area, and it is not fully represented by the grid (they still don’t know how far back and up it extends).  The ictal onset also spreads rapidly to most of the area that the grid is covering.  The consensus is that resection will not really be an option due to the proximity and inclusion of the motor strip.  They (and we) do not want to risk paralysis or loss of sensation (touch). 

Obviously very disappointing. 

Cortical Mapping

Before making any final decisions, we are still going to do mapping today.  Mapping is a long process to try and determine what each part of Hannah’s brain does.  She currently has 112 electrodes sitting on the surface of her brain.  The neurologist is going to isolate two electrodes at a time and send a small electrical current between the electrodes.  We will then be watching Hannah for any muscle movement or listening for her to identify any type of “weird” sensation (tingling, movement, inability to talk, etc, etc.).  With each pair of electrodes he starts at 2 milliamps of current and works his way up to 15 until there is a response.  As you can imagine, with 112 electrodes, and all the different current settings, it will be a long process.  Hannah does need to be awake and alert during the process, and she needs to have been seizure free for several hours prior to (and during) the process.

Along with a neurologist (or two), Hannah’s nurse will be in the room, two EEG technicians will be there, and a family life specialist will be there to help her.  It will be a crowded room.

Vagus Nerve Stimulator

If we do not end up doing the resection, our neurologist would like to implant a Vagus nerve stimulator during the same surgery that the grids are removed.  The stimulator is a small device similar to a pacemaker that is implanted to electrically stimulate the vagus nerve.  This procedure was discussed before we decided to attempt surgery, but our neurologist didn’t (still doesn’t) feel it will be very effective in controlling the type of seizures that Hannah experiences.  However, since she will be under general anesthesia anyway, and it is a very minimally invasive procedure to place the stimulator, he feels it is worth trying.

We were somewhat stuck in the PICU area for most of the day since her neurosurgeon was tied up in a long surgery and couldn’t release her back to the PEMU area until late afternoon.

During her stay in the PICU though, she got a visit from Sunny, another one of the pet therapy dogs.

During the night she had three seizures and another during the day.  She also had a strange aura/seizure right before leaving he PICU that really frightened her and was a lot different than what she was used to. It also caused a quick onset of nausea and vomiting. 

This seizure activity was enough to give our neurologists enough information to decipher where her seizures are originating from (see our next post), and she was able to start back on her anti-seizure medications.

About 5:00 pm we were able to move back to the PEMU area which is so much nicer than the PICU.  The hospital really spoils the PEMU patients.  We get a private room designed for two patients all to ourselves, which means we have a lot of room to spread out and to accommodate visitors.

Tomorrow (Wednesday) she is scheduled to have cortical mapping done.  This is a long and involved (lots of people in the room) process.  If you’re thinking of visiting, you might want to wait until the late afternoon/evening, as it will be pretty crowded in the room with doctors, nurse, EEG techs, family life specialist, and parents.

She continued to recover more this morning.  Her facial swelling was way down, and she was very alert and talkative.  She had a chance to play a game with her cousin, and even got a visit from one of the therapy dogs.  If she wasn’t on orders not to eat or drink anything in preparation for surgery,  she probably would have eaten a meal today too.  The only thing she’s eaten since last Monday night is a few bites of apple sauce, Jell-O, and yogurt.

Visitors were plentiful today.  Enough people to surround her bed and pray for her before she headed off to surgery. 

About 12:30 they wheeled her from the PEMU area to prep for surgery.  In the prep area, we met with the neurosurgeon to discuss what exactly it was they were going to do.  He explained that he’d use the existing incision (we weren’t sure if a larger incision would have to be made).  He planned to move her existing large grid a bit more towards the front, and then place a new grid next to it but farther back.  He would need to slide it between the brain and the dura.  He was also going to remove the existing grid that was in the fissure between the hemispheres and replace it with a new larger grid, but placed farther back in the fissure.

About 1:45, she headed off to surgery.  At 5:00, the neurosurgeon came out to let us know that the surgery had gone really well and that the new grids were in place (for a total of 112 electrodes).  She didn’t have any of the “oozing” problems that she had in the previous surgeries. 

Shortly after that, we joined her in the ICU and he has been recovering nicely.  Faster than either of her two previous surgeries.  Within an hour she was awake, and asking if she could eat anything. 

We did get another visit from our neurologist tonight before he headed home.  He was talking to us about the different scenarios and what it would mean.  For example, they may or may not be able to determine a specific origination point, and that point may or may not be in the motor strip.  He stressed that we wanted to “do no harm.”  While he didn’t come out and say it yet, we’re feeling as though they’re preparing us for the likely hood that the origination of her seizures will be too close or within the motor strip for them to be able to do anything without risking loss of motor function.

We’ve stopped the anti-seizure meds again, so now we just wait again until she has more seizures. We’ll know more tomorrow, or the next day.

She’ll probably head to surgery again today around 11:00, 11:30 to start all over again and move the grid farther back.

Day started with a visit from the neurologist to explain what they had learned from the seizures she had through the night.  As the day went on, her seizures did get longer and more violent.  She also was experiencing longer recovery time than she was used to.  It took several minutes after the seizures before she could move her right hand.  First time that happened, we kept asking her to squeeze her hand, and when she couldn’t it really scared her.  We learned to wait several minutes after her seizures before doing the standard neurological test (squeeze fingers with each hand, push feet up/down, check pupils, ask what day it is, etc, etc.).

After talking to the neurologist again, they did decide to start her on some low doses of anti-seizer medication.  That seemed to help a bit, as she didn’t have as many seizures Saturday night, and they also weren’t as long or violent.

After last of the visitors left Saturday night, and it was just three of us, it hit hard that we have to do yet another surgery, and that it appears the seizures are originating towards the rear of the frontal lobe, near the motor strip.  Wondering why we’re always the unique case.

Sunday

Sunday was a good day.  The anti-seizure medication, even though it was a low dose, seemed to help a lot with the seizures.  They are still longer and more intense than when she is fully medicated, but better than without any medication.  She only had a couple Saturday night, and only a few during the day.  Her swelling is way down, she is talking a lot more, and she is much more alert and engaging.  We’ve been able to talk to her about what she’s been through, and what she still needs to go through.  Her spirits are still up.