Monday, January 16, 2017

A Surgery Date and A Song

We received the news that Byron's Functional Hemispherectomy surgery will be on Wednesday, February 8th at 8am at Morgan Stanley Children's Hospital in New York.  It will go for most of the day.  DEEEP breath...

And then this

Byron told me that he had a song stuck in his head today.  He wanted to see the lyrics and for me to help him understand what they meant.  I looked it up and was amazed to see that it summarized this unimaginable thing.  For this little boy (and his family)

"Something Wild"
by Lindsey Stirling
                                                        
You had your maps drawn
You had other plans
To hang your hopes on
Every road they led you down felt so wrong
So you found another way

You've got a big heart
The way you see the world
It got you this far
You might have some bruises
And a few of scars
But you know you're gonna be okay

Even though you're scared
You're stronger than you know

If you're lost out where the lights are blinding
Caught in all, the stars are hiding
That's when something wild calls you home, home
If you face the fear that keeps you frozen
Chase the sky into the ocean
That's when something wild calls you home, home

Sometimes the past can
Make the ground beneath you feel like a quicksand
You don't have to worry
You reach for my hand
And I know you're gonna be okay
You're gonna be okay

Even though you're scared
You're stronger than you know

If you're lost out where the lights are blinding
Caught in all, the stars are hiding
That's when something wild calls you home, home
If you face the fear that keeps you frozen
Chase the sky into the ocean
That's when something wild calls you home, home

Calls you home
Calls you home
Calls you home
Calls you home

If you're lost out where the lights are blinding
Caught in all, the stars are hiding
That's when something wild calls you home...

If you're lost out where the lights are blinding
Caught in all, the stars are hiding
That's when something wild calls you home, home
If you face the fear that keeps you frozen
Chase the sky into the ocean
That's when something wild calls you home, home

Monday, December 26, 2016

Surgery - The Functional Hemispherectomy

When Byron, Bob and I first met Dr. Akman, the head of Columbia Presbyterian's Epilepsy Center, we were very impressed with her credentials and experience with Epilepsy.  I also knew, going into the meeting, that she would bring up a surgery that I had heard of, but never considered an option or a necessity for Byron -  Hemispherectomy.

This surgery, mostly now done as a Functional Hemispherectomy, is when a surgeon "disconnects" the side of the brain that is causing seizures.  Through the Corpus Callosum, a broad band of nerve fibers joining the two hemispheres, the surgeon "unplugs" the damaged brain hemisphere, giving the patient an 80% cure rate for seizures.  This surgery was brought back into regular use by Doctor Ben Carson in the 1980s (a famous presidential candidate) in his former incarnation as prominent neuro-surgeon at Johns Hopkins. At that time they were doing Anatomical Hemispherectomies, where they actually removed the brain tissue itself, but this is not often done anymore.


Because Byron had a stroke pre birth, his right hemisphere looks like this.  This is his actual MRI when he was an infant.  You can see that there is very little brain matter on the right side.  The seizures are emanating from the scar tissue in that white area.







After we discussed the possibility of this surgery with Dr. Akman, she asked me how I had heard of the surgery. I told her that I had heard from other mothers of children who had Byron's condition and online groups.  She was very upset that I had not heard about it from any doctor or Byron's former neurologist.  She told us that there is still such a stigma about this surgery that many families and even doctors, though it can provide a cure, will not consider it.

I told her that if all goes well with Byron, if he has the surgery, I would be happy to talk to other parents or even doctors about our experience. She looked very moved and she said "You can be my voice!"  So in keeping with that promise, I thought i would make this post a little more detailed than usual.

After Byron's endless video EEG and MRI, the Chief of Pediatric Neurosurgery at Columbia, Dr. Feldstein, told us that Byron is an exceptionally good candidate for this surgery.  The right hemisphere, being the non-dominant hemisphere, has fewer side effects upon disconnection e.g. no loss of speech.  (The speech center is usually on the left side).   And Byron has so little brain matter on that side anyway, he felt that it is very unlikely that Byron is using much of it for normal functioning.  

But there are several next steps.  We heard that after we left the hospital, they presented Byron's case to the Nuerology team, as is the typical protocol.  During that meeting, other Eleptologists felt that we hadn't tried enough pharmaceuticals yet to warrant a surgical intervention.

So, first we have to exhaust another course of pharmaceuticals, and this is not our first choice.  Dr. Akman has prescribed an evening dose of Diazepam (Valium), in addition to his Trileptal, to see if this will calm the night spiking.  She admitted that she does not think this will work but it needs to be tried.  The almost constant night spiking that Byron has, ESES, is nearly impossible to cure without heavy, and potentially toxic doses of medicine.  Fortunately she is not asking us to go to that extreme route.  (ESES can happen, and does for many children, on both sides of the brain, and these children do not have a potential cure as Byron does.)

Then, at the end of January, he will go in for another shorter video EEG, and if the subclinical spiking is still present, we move forward towards surgery.  

Byron also needs a Functional MRI, to check which parts of his brain do what, but that can be done in this time frame as well.

A word about CBD oil.  Many people have reached out to me about Cannabis Oil.  We have researched this extensively, and discussed it with Dr. Akman. She does not recommend it for Byron and from what I have researched, when the seizures emanate from a known infarct, the injury to the brain, the CBD oil does not help much at all.  And when speaking to other mothers who are in the same boat as we are, the CBD oil was not helpful.

Surgery is our best option at this juncture.  If the constant subclinical spiking is gone at the end of January, then YAY!  But if not, we move towards this scary but necessary option.

Of course we asked what the outcome would be.  The surgery takes about 8 hours. Best case scenario, Byron wakes up with minimal side effects, is gone from the hospital after two or three days, and is back in school in a month.  His seizures and subclinical spiking go away, he has a clean EEG, and we ween him off of all medicines for good.

This is the outcome we pray and ask for blessings for. And we know it is possible.  Byron's recovery from his Selective Dorsal Rhizotomy was the quickest they had ever seen in the hospital.  But even if it is not that quick or complete, we can work with that too.

And as always, I will keep this blog updated about Byron and his wonderful world!

This link takes you to a very sweet video of a man in Wyoming who lights a tree for every child in the world who has had a hemispherectomy.  It started when Ben Carson operated on his granddaughter.  Now he has lit hundreds of trees.   It is the Hemi-Lighted Forest of Hope.

http://www.kgwn.tv/content/news/Hemi-Lighted-Forest-of-Hope-406163345.html










Thursday, December 22, 2016

School?!

I debated whether to send Byron to school today. We didn't get home until 7:30 last night and he had anesthesia yesterday, which can take a while to bounce back from.

I ultimately decided that the last two days before winter break were important to catch up as he had  missed school all last week. So off he went like a trooper. By 11:00 am I got a call from the school nurse, letting me know that he was falling asleep in class. So back home we are and I guess winter break starts early!

He is sound asleep and has been for the last hour.

Wednesday, December 21, 2016

Hair!

Waiting for the MRI. Electrodes gone!


Monday, December 19, 2016

Going Home Wednesday

Byron is scheduled to have his MRI on Wednesday at 11:00 am.  He will have to be sedated.  So with any luck at all we should be home by Wednesday evening.

My shift has started again and Bob has gone back home.  Onwards!

Sunday, December 18, 2016

More Therapy Dogs

Bob, who is on hospital duty today, writes "Today the therapy dogs came by.  In all there were 4 dogs that came to visit.  They were very nice and liked petting.  Here are some pictures I took today.  See below.  Also, Byron was reconnected to all new electrodes today as the they only stick for about a week. "






Coming Home Soon!

I just spoke to Bob and we are in the home stretch.  Byron will have a sedated MRI either today or tomorrow and they will discharge him Tuesday morning.  I will be so happy to have him home!!

Friday, December 16, 2016

Thank you to his Class

Bob writes -  Byron was very happy to receive the Get Well Soon Slide Show from his class today.  Byron wanted to record a thank you for his teacher to show to the kids.    Take a look!



Day Five - Endless Video EEG

The focus is now on making sure that we capture a full seizure on the video EEG and to study it when it happens.  The neurology team is reducing Byron's medicine and letting him stay up until midnight every night to force the issue.  Which has made me very very tired.

Bob is here for the weekend shift,  and if need be I will return on Monday.  The way things look now they are fairly sure he will have a seizure before Wednesday.  It seems utterly barbaric to put him through this but I am assured this is what needs to happen to know the best way to treat this very difficult form of Epilepsy.

ESES - Electrical Status Epilepticus in Sleep is the official diagnosis as of right now.  This form of Epilepsy can be very hard to control so they really need lots of data.

And as always Byron is doing great.  He likes staying up late but he is a little loopy.  Byron's school mates sent a get well soon slide show.  It is so sweet.  Because their names and pictures are in it I won't put it here but it was so touching and heartwarming.  Byron loved it!

He had a visit today from the sweetest therapy dog who looks just like our dog Daisy!



And Santa finally came in person for a real visit.  He brought Rudolph, an Elf, gifts of Legos and took a selfie with Byron.