Good Updates

In this scenario there is no "good news" just updates.  But I feel like we do have some good news for today.

1). I have sorted out the insurance snafu.  This hospital does not take his insurance.  So only things related to his emergency room visit will be covered, including this stay in the hospital.  No follow ups afterwords, MRIs etc would be covered. We have worked out changing his insurance as of February 1 to something that NYU Langone and their doctors will take. Yay!

2) Almost everyone who works here on this floor, doctors, eleptologists, surgeons, cleaners, etc are all women!  I have never seen anything like it.  The doctor I saw this morning (female) told me that they get that a lot i.e.  people being surprised/excited by this.  It's so refreshing and wonderful.  There is an energy of comfort, nurturing, taking time, peacefulness that I have not felt before related to neurology/epilepsy.  It's quite wonderful.

3) There is an interim plan for the way forward.  Byron was on sooo many potent (toxic) medications last night and that is why he was delirious and vomiting.  Phenytoin was one. He is resting today on no food, but they have weened him off the most potent medicine and now he is on stabilizing medicines. The doctors are preparing now for the likelihood of surgery but they still want to get the seizures under control so that the brain is in a better state for the surgery.  They are going to try one more very intense medication this weekend.  This can cause a bit of labored breathing so they may have to intubate him while he is on it (not good news) but they also might not.  Depending on how he is breathing.

4) More testing today and Tuesday of next week.  Byron will be here at least until then and likely beyond.  There will be a very high resolution MRI today.  This will show the remaining brain tissue and any possible missed connections.  Then on Tuesday is a SPECT test where they inject a dye just at the moment of a seizure and they can see exactly where in the brain it is happening and how it affects blood flow. 

5) Byron's grandmother Charlotte is arriving here tonight from Florida.  She will be a wonderful addition to his care team. 

Lots of people ask how Bob and I are doing.  We are both fine, differently of course, but generally fine.  I will speak for myself when I say that while this whole episode is challenging, if we can arrive at an outcome where the seizures can really be gone for good, all of this will have been worth it.  This is the hope, prayer, outlook that I hold on to and so I am really not all that worried.  It is awful to see Bryon suffer, but the surgical outcomes for Byron have been way less stressful and challenging for him than these uncontrolled seizures.  The risk of removing ALL of the right brain (called an anatomical  hemispherectomy) was never on the table before due to the higher risk of hydrocephalous.   These surgeries are a last resort.  But Byron already has hydrocephalous so the worst case scenario has already happened.  Therefore a full removal of the right hemisphere actually makes sense now.  There should be no further deficits in cognition, eyesight movement etc as this part of the brain is already not contributing to Byron in any meaningful way other than some blood flow and bad seizures.   I have read many accounts on the epilepsy groups of kids who have this exact path: Functional Hemispherectomy , Resection, and then finally Anatomical Hemispherectomy.  And this path seems to do the trick for most.  Some never get hydrocephalus, but again since he has that already, the only risks are what you would encounter in any brain surgery.  The third time can have more complications due to existing scar tissue etc but I feel like this team is excellent and I trust them.  

 

Not too Much to Report

 Rough night but Byron is lucid and talking normally this morning. As I wrote earlier, the shunt surgery was an enormous success.  Everyone is very happy about this.  Although he will have to have it for the rest of his life, according to our good friend Dr. Richard Gillett, shunts have been successfully implanted since the 1950s with great outcomes.

But those darned seizures!  The Neuro this morning said there has been zero control with all of the medicines they are throwing at them.  One of the young men (I think he was young - I was in the dark and groggy) said that the kinds of medicines they are looking at now are "experimental" and even he didn't know their names.  Big Neuro consult around ten so I'll write more then. 

Bought Byron a nice bacon egg and cheese, with those awesome New York bagels.  But just found out no food at all for him this AM due to the fact that he is now a choking risk :(

Rough Night

We are in the middle of a rough night so far. The doctors are trying everything they can to quell the seizures but so far nothing is working. Depakote, Ativan, Vimpat, Keppra. These are the medications so far. Byron is delirious and incoherent. Two episodes of vomiting. Very scary because he was deeply asleep and lying down. Very important someone in the room with him at all times. The nurse did not catch it. Uggggg! 

I really can’t see any way this is going to go without another surgery. All the seizures are coming from the remaining parts of the right brain. Mostly from the parietal lobe.  Had a good discussion with the surgeon yesterday afternoon. Dr. Heldago. She would do the surgery if need be. There is even a chance it could be done with lasers.  This is a relatively new way to do this surgery from what I understand.  

Nice Hospital and Updates

Just arrived at the hospital.  I'm seeing Byron for this first time since all this began.  Right now he is going in and out of consciousness.  It seems the new seizure medicine, Vimpat, is making him very groggy.  When he speaks it is mostly in gibberish or half thoughts. I'll find out more about this med when the doctor comes in. 

NYU Langone is a new hospital for Byron. It’s hard not to reflect on all the days and weeks at Morgan Stanley Childrens and compare. We are very fond of that hospital. This is nice too. Not as many restaurants but amazing views. That’s 

the Empire State Building right outside the window.  The sunsets are going to be awesome!

Some thoughts

Not much news this morning. Waiting for Byron to recover from the shunt surgery and adding medicines to get the seizures under control. For those asking, the shunt is a permanent addition to Byron's head. It drains the fluid from the brain into his stomach.  Sometimes they need to be adjusted or even replaced. They adjusted it this morning with a powerful magnet through the skin. 

Today, one of my favorite writers/artists Suleika Jaouad, who has wrestled with leukemia most of her life said this.  She was reflecting on her year:

"When you learn for the third time you have cancer, it's easy to feel hopeless. ... even in the hardest moments, there were so many joys. That life is not a monolith. That our forever work is to learn to hold the brutal and beautiful in the same palm."

That our forever work is to learn to hold the brutal and beautiful in the same palm

Three times jumped out at as we are in the hospital with Byron for his third brain surgery, his third bout with intractable seizures.  But it was this last line that really struck me.  I didn't plan to spend this much time in hospitals.  This much time ruminating on life altering medical decisions.  This much time watching my son go through multiple painful surgeries and endure terrible seizures. But all of us have grown in the process.  All of us have learned how strong we are.  How much we love each other and are loved.  And we have deeply experienced the mysterious work of Grace and Blessings that surround us and hold us.   

While I would not wish these experiences on any family, there is a quiet arresting beauty about the hospital in the late evening.  The focused meditative work of the night nurses making their rounds.  The bright and hopeful faces of the pediatric specialists.  I have been changed by all this.  More compassionate.  More surrendered.  More at ease with the twists and turns of life.  

FaceTime with Max

 Byron just had a FaceTime call with our dog. He’s lucid, speech is normal so that’s all good. While we were in the call I could see another seizure happening. So there’s that..,

Morning Day 3 NYU Langone

 Part of the reason I keep this blog is so I have a record of dates and procedures.  But also to remember and reflect on these times.  Yesterday I put a call out for prayers on Facebook while Byron was going into surgery.  The outpouring of love and blessings was immense. Even people on pilgrimage in India were able to offer prayers and chants from powerful spiritual places there. We felt so held and embraced by friends and family.  It was, and continues to be, a joy to be on this journey.  Even when it is incredibly challenging. 

Last night Byron (who was very high on pain meds), was being wheeled through the halls coming out of surgery.  As he passed the doctors and nurses he was exclaiming to each one "Thank you for saving my life!"

Out of surgery!

 All is well. The Doctor called from the OR to say that Byron was awake and that the surgery went well.  Now they can load him with seizure medications and hopefully stop the seizures. Hopefully Byron will feel a little better with the shunt. Maybe headaches less?  Let’s see. 

Surgery Tonight

 The neurosurgeon just said words a parent does not want to hear “I’m really worried about your son.”  She said over the last three hours he has really deteriorated. He’s constantly having seizures as well. He’s utterly exhausted.  The shunt will be placed tonight. She said her team is willing to stay. 

Hydrocephalus

We learned just now,  from the MRI, that Byron has hydrocephalus.  This is a serious side effect of the previous brain surgery.  About 30% of people with hemispherectomy get hydrocephalus.   It is defined as:

"The buildup of fluid in cavities called ventricles deep within the brain. The excess fluid increases the size of the ventricles and puts pressure on the brain. Cerebrospinal fluid usually flows through the ventricles and bathes the brain and spinal column. But the pressure of too much cerebrospinal fluid can damage brain tissues and cause a range of symptoms related to brain function."

Byron will have neurosurgery tomorrow morning to insert a shunt, that will drain the fluid from his brain into his stomach.  This is a permanent device that will need lifelong monitoring.  

 

Logistics!

 What a bear our health care system is.  Byron went to NYU Langone Emergency because the doctor that he has been seeing since he was five, transferred there to be the head of Pediatric Epilepsy Surgery.  When Byron and Bob checked in yesterday and they showed Byron's insurance, nobody flagged anything.  Well we found out today that the hospital and the doctors do not take Byron's insurance. UGGGG!   After way too many phone calls (even the hospital couldn't help) I finally got the answer from his current insurance that because it was an emergency visit, they will pay for it.  Even for the inpatient care. Phew! Now I just have to see if they will pay for the doctors.  These hospitals bill the doctors separately.  More phone calls.  I even had to make a trip to the county social services office to see if they could help solve this.  When you have a sick child you shouldn't  have to deal with all this!  Ok enough complaining.

The seizures are still not controlled.  He has had multiple seizures today.  They are hoping they can get them under control tonight. Byron is in an MRI now.  The bummer is they have to take off all the EEG leads to do the MRI and then put them back on.  It's lots of uncomfortable pulling, chemicals to remove and then more glue. 

On a lighter note, someone brought this plant to his room today and said to give it to his mother.  Good!  I need it :). Bob is there so he accepted the plant on my behalf.

Nice private room.

Byron is moving upstairs now to this space. All things considered this is a great room.  Nice water view.  He may be here for a bit so this is a plus. 

Three medicines so far

Trying to control the seizures and pain from headaches. Byron is on Keppra, Ativan and Toradol as of this am.  Still in the ER   

Update: moving to a room now for inpatient and switching seizure meds to Vimpat. 16 known seizures so far. Seizures all coming from disconnected side, middle lobe,  Parietal?

Seizures Return

Yesterday morning, at 7:45 am Byron had a seizure. He was conscious but his eyes were locked to the left.  He became jittery and had a severe headache. Over the past few months he had been complaining of headaches and had an episode of vomiting in the middle of the night.  

Right after the seizure subsided I emailed his surgeon at Columbia, Dr. Feldstein. Within 10 minutes, just before 8 am, he emailed me back.  Amazing guy.  We were not able to see him as he had surgery all day so I reached out to Byron's epilepsy specialist, Dr. Akman.  It turns out she has moved to the NYU Langone Epilepsy Center as the head of their epilepsy surgery center.  After several attempts to reach her, by about noon, we heard back from her nurse.   Off to the NYU Emergency Room!  I was also able to speak directly with Dr. Akman who concurred that we should go the emergency room and the Bryon should be admitted to the hospital.   We are very fortunate to have such great doctors on our team, and that these renowned epilepsy centers are within a two hour drive. 

Bob took Byron to NYU and after a several hour wait in which Byron had over 9 recored seizures, he finally got a bed and hooked up to the EEG leads.   We should get more information today.  

Questions I have - What medications will they put him on to get some control of these new seizures?  Where are the seizures coming from? If another surgery is the solution (there is still a lot of brain that could be seizing on that right side) is an anatomical hemispherectomy the answer?  This is where they completely remove the brain on that side.  The first surgery disconnected the right brain, the second removed the two lobes that had started seizing again in 2022.  As a last resort they can remove the entire side. There are risks to this I think.  Hydrocephelus does occur more frequently with this type of surgery.  Would Byron even want to go through that again?  As he is nearly an adult the decision would be his.  More to come...

Byron in the ER with his Max Blanket

 

High School and Beyond

Byron has had a remarkable year so far.  He has just completed the fall semester of his senior year with all As and one B.  His overall GPA is a 3.4.  It would be much higher but his first two years of High School were not as successful as the last two.  This was due, in part, to the return of seizures and a second brain surgery.  But now, with health challenges behind him, the sky is the limit!  In June of 2025 he will graduate from the Collaborative College High School (CCHS) in Hurlevyille, NY with a High School diploma and an Associates Degree from the State University of New York at Sullivan. 

He has already applied to colleges.  He wants to go to college in New York City and his first choice is Baruch University.  Second choice will be Hunter College.  He is hoping to major in Computer Science with a minor in Business.  

In 2014 we bought a Coop in Washington Heights.  He will live there when he goes to school.  Bob will live with him for a while as we are not confident that Byron is ready to live on his own just yet.  

Overall our family life this year was impacted by health challenges for both Bob and myself.  

First Denise - In February of this year, I woke up with overnight hearing loss in my right ear.  When I was speaking to a colleague on the phone that morning, her voice sounded like Micky Mouse.  I even accused her of using a fake voice!   Everything in that ear was distorted.  After many medical appointments and tests, we discovered that I had a benign tumor growing in my ear on the vestibular nerve.  This is called a Vestibular Schwannoma - also called Acoustic Neuroma (AN).  There are two options to treat tumors like these.   The first is full on brain surgery where the tumor is removed. The second is radiation most commonly known as Gamma Knife Radio Surgery.  This is a single procedure with a highly focused radiation beam.  Then, over time, the tumor slowly dies.  This "die off" can take up to 5 years to be complete.   This was the treatment I chose and had the Gamma Knife treatment in April of this year at NYU Langone Neurosurgery Center. 

Symptoms from an AN like mine, which was small but growing, can range from none at all to a person being unable to walk, a constant feeling of head spinning, dizziness nausea and severe headaches.  My symptoms were varied but in the mid-range.  Initially I had hearing loss and I developed severe tinnitus which has not abated to this day.  Six months after the Gama Knife treatment I developed a constant dizziness/wonkiness that made exercising, walking and doing much of anything on my feet challenging.  This is a common side effect of the radiation; as the tumor dies it irritates the surrounding nerves.  In July I developed Facial Palsy in the right side of my face where my face was frozen and unable to move on that side. By August I was not really able to drive as any quick movement of my head would cause me to get extremely dizzy.  Also in early August I fell outside while returning a local dog that had escaped from his lead.  The dog pulled hard and I landed on my right side with an excruciating thud.  On top of everything else, I now had a concussion which made the AN symptoms more pronounced.  

I am doing much better now.  I am driving, walking and I hope to start exercising again in the new year. The dizziness has mostly resolved.  I still have tinnitus and hearing loss and these will be permanent.  I likely will lose all hearing in my right ear.   

As for Bob, he has had chronic knee pain for some time.  In October Bob had his right knee replaced.   He is doing extraordinarily well.  After only two weeks he was up and walking and now he can walk, shovel snow and just about anything else he used to do. We are very please with his recovery.

And now we can circle back to all the good things in our lives.  We end the year full of gratitude for all of the blessings that enrich our lives.  In September we traveled to Rome to attend my dear brother's wedding.  I was well enough to officiate the ceremony alongside his new bride's wonderful sister.  It was a beautiful ceremony in the hills above Rome. We are so happy for Jeff and Alessia.  Bob and I celebrated our 20th anniversary in Rome the day after the wedding.

We enjoy seeing family and friends.  We delight in watching our magical granddaughter Charlotte grow up.

While 2024 had its share of challenges, we round out the year happier, healthier and looking forward to the next phase of our lives!

XC Road Trip 7/16/23

 Over the past few days we have been driving over 500 miles per day visiting all the different national parks, like Zion, Arches and Monument National Park. We also saw Mount Rushmore which was honestly kind of jaw dropping. Tomorrow we go see Niagara Falls then after that we have a final 8 hour drive home. 

XC Road Trip 7/11/23

 We went to see Zion National Park and it was the best Park we’ve seen the whole trip. Everything was beautiful. We have a long drive to Denver today but we  should be there tomorrow.

XC road trip 7/10/23

 We arived at the Grand Canyon yesterday after a long two days of driving. Along the way we stopped at the Petrified  Forest  wich was cool. The Grand Canyon was beautiful.