Back in School

Byron is back in school and life slowly returns to "normal".   He takes his large quantity of meds every day but other than that he seems completely fine.  

He could not handle a full day at school or multiple courses at once, but the one hour per day three days a week seems to be ok for now.  He is taking two college level courses and they are working him hard.  But he is trying to keep up and the teachers and school admin have been wonderful. 

Monday he goes back to NYC to see his surgeon for a follow up. Then in April he goes back in the hospital for about a week to see what is going on with the seizures.  The seizures are controlled right now but his epilepsy doctor really wants to see where they are coming from in the brain.  So they monitor him while weaning the meds and then when they see a seizure they record it on the SPECT machine.  

This child....every mother of a child with a complex medical diagnosis says their kid is the bravest on earth.  But mine really is :)    He does not seem depressed or ill-affected by the last few weeks of constant medical attention and new issues.  

And we have tons of great support.  Family and friends have been truly wonderful.  Byron's surgeon, Dr. Harter,  called yesterday just to check in.  The head of the NYC Hydrocephalus Association has called me twice just to chat.  And, as always, I pray and meditate to keep myself nourished and refreshed. 

So for now....dare I say it...all is good!

Byron’s meds and vitamins.  The doctors have prescribed magnesium, CoQ10, and Riboflavin for the headaches. B6 is for mood changes from the Keppra. 

P.S.  I always forget there is a comment function on this blog.  People say it is hard to comment so I don't always check.  Thank you to all who have so beautifully commented. I have read them all and am so touched by your kind words and compassion.   These gorgeous words from my nephew:

"Byron is a diamond: brilliant, multifaceted, unbreakable: forged from the stuff of life placed under the most intense pressure, and polished with years and years and years of loving care. Every time the sandpaper-rough hand of adversity took a pass at Byron, he has just come out burnished even brighter in the end. Even when cloven clean open, each cleave just allows his true form to emerge more clearly.

What a gem of a young gentleman.

What a precious family.

You shine like the stars."

Home in NYC

About ten years ago, we decided we needed to have an apartment in New York City near a good hospital. In this way we had a place to stay whenever Byron was admitted.   The real estate market was still pretty soft so we got a good price on a one bedroom in Hudson Heights, just north of the GW Bridge.  It's really easy to get to from upstate and has been a wonderful place for us.  

The apartment is very near to Morgan Stanley Children's Hospital on 165th street, which is where Byron was being treated.  Now that the hospital is in the 30s on the East side it's a little more challenging for us.  But I was so grateful that we could just take an Uber home after being discharged yesterday.  Byron would have been very uncomfortable with a long car ride. 

Today, Byron is not having headaches per se, just lots of varying pressure depending on how he is sitting.  The doctors said that this new shunt might require small adjustments going forward.  He said "Expect two or three adjustments".   But he said that could be in the doctor’s office so that is good!

Bryon is on a very high flow setting right now.  The shunt before was not draining enough. This one is draining much more.   I hope we can hit that sweet spot where he has just the right amount of fluid draining. 

Byron this AM watching his favorite shows. 

Byron is back!

 It’s an amazing feeling when you get your child back. Byron has been about 25% of himself (personality wise) and in chronic pain since the shunt was first put in. One can be forgiven if this brings on a certain kind of stressful despair.  The only time he was himself was in the morning. The rest of the day he would speak with his eyes half open and holding his head. This constant pain cycle was what brought us here two days ago. 

Today! After the surgery he is almost 100% himself. He’s chatty, alert and his humor is back. 

The surgeon explained that shunt placement with hemispherectomy is very very tricky.  The brain doesn’t drain the same way because there is just so much fluid.  A typical case of hydrocephalus can be pretty straight forward.  But not with Byron. They explained a lot of setting numbers that I didn’t understand but they said that the initial shunt was under draining and it had been set way too low (for Byron), perhaps ok for someone else. So the pressure was building up throughout the day causing the problems. They put a second valve in and have it draining fairly high right now. And he’s back!  No headaches, no pain. And even no seizures (still on the three meds but they are still working). 

The doctor said there will likely be more setting changes in the coming months but these can be done as an outpatient. 

His blood pressure is high right now so they are monitoring this but boy oh boy am I a happy momma!  One more night in the hospital and then home. 

Out of Surgery

All went very well.  

They came this morning to wake us at 5:30 am to take off the EEG leads and to bathe him before surgery. They have all these cool disposable bathing things now.  They have this cap that they put on his head that washes the hair without water.  Then they do sponge baths with these really large wipes.  So much disposable stuff but certainly easier on the patient.  

He is in recovery now but should be back in the room soon.  They are likely going to keep him overnight for observation.  They replaced the shunt valve with a larger one that should drain better.  The goal for today will be to make sure he is more lucid with no headaches.  Fingers crossed!

Byron in Surgery

Byron has gone in to surgery to have his shunt looked at more throughly.  As he was leaving the floor, one of the male nurses pulled me aside and said  - "I just want you to know, we see a lot of teens up here.  Your son is not just polite but he makes eye contact.  You can have a conversation with him.  It's rare.  It just shows he was raised well."  I was very touched by that. 

Last night they put EEG leads on Byron for the thousandth time in Byron's short life.  Before they started they asked - "Is this the first time for an EEG for you?"  Byron and I both laughed.   I showed her some of the following pictures.  

The Best of the Best

We have met a few doctors at the very top of their field.  Without exception they have been the nicest people. Today we met another wonderful human, chief of pediatric neurosurgery at NYU Dr. David H. Harter. 

https://nyulangone.org/doctors/1114912292/david-h-harter

Today has been a confluence of 3 great rivers (minds).  In eastern mysticism this confluence is very auspicious.  Dr. Akman, Dr. Fryer (headaches), and Dr. Harter specialist in hydrocephalus.  Dr. Harter took one look at Byron and said “I don’t care what all the imaging says, my spidey sense tells me there is something wrong with this shunt.  When a shunt is malfunctioning  it’s like you are driving full speed with the parking break on.”  

My jaw dropped.  I told him that this is exactly what I feel like has been happening to Byron!

So that concern brings him to his next action.  He wants to perform minor surgery tomorrow to go into the shunt and in his words “look under the hood” .  Byron agreed that he wanted this too, to be sure of all possibilities.  So we all agreed- EEG today to check on seizures, pain protocol for headaches, and a thorough physical check of the shunt.  Phew!  We might actually solve this 👏🏻👏🏻👏🏻

Byron is Lucky

 We hear that a lot from doctors and others.  And they said it again today.  Byron's primary epilepsy doctor, Dr. Akman happened to be on the floor today, and at the same time that she was visiting, NYU's top headache specialist also happened to be on the floor. So NYU's head of headaches :) and the chief  of epilepsy were able to interview Byron in depth and then confer together. to create a plan.  Byron IS lucky!

The plan is this - tonight they will hook Byron up to the EEG leads to make sure he is not having seizures.  At the same time, the headache specialist will come up with a plan to stop the pain from the headaches.  Dr. Fryer, the headache specialist, thinks that the shunt surgery might have caused Byron to have migraines.  And these migraines are what is causing all of Byron's problems right now.  The fatigue is seizure medicine related, but the headaches could be severe migraines.  

Maybe if we get the headaches under control, Byron's sweet and bubbly personality could return!

The Never Ending Saga :)

So here we are, back in NYU Langone - AGAIN!  Sheesh.  Poor Byron. Poor us :)

Nice view through:

Here is what is happening now.  Yesterday morning Byron took a test at school.  When he got home he was in excruciating pain (in his head).   I reached out to the Neurosurgeon via the patient portal to see if there was any way to see someone as an outpatient i.e. to not go to the emergency room.  Her response was "Please come to the emergency room now, we will let them know you are coming."    The drive to the emergency room was very hard for Byron.  He vomited as soon as we got to the hospital.

This is a kid who has been through two major brain surgeries with basically just Tylenol for meds after the first 48 hours. He has a high tolerance for pain. He was back in school a month after the last surgery, full time with college courses.  

But this shunt placement surgery has fundamentally changed how Byron acts, feels, looks, tolerates stress etc. He has a hard time reading anything and is constantly tired. And now we must get to the bottom of these headaches.  He's usually fine in the morning and then devolves through the day.

He has had several tests so far.  One showed that the shunt might not be draining enough so they adjusted that. Just as an experiment Byron took an online test that was due today and so far no headache so that is good news.  But the doctors really don't know what is happening.  They are conferring this morning and they will come speak to us soon.  I told them that what we need now is the "why" the headaches are happening, and a pain management protocol for when they do happen.  When we got here they had him on something called Toradol which really cut the headaches almost immediately.  But you can't use that at home apparently. 

More soon I'm sure 

Doctor's Appointment Updates

We travelled to Westchester today to see Dr. Akman in her new offices. Dr. Akman is Byron's epilepsy doctor who moved to NY Langone from Columbia.  

She thought he looked good and thankfully, is going to slowly wean Byron off of one of his three medicines.  So we having a weaning plan for the Depakote.  

Then we made an appointment for March 30 for inpatient testing at NYU.  This would mean that Byron would check in to the hospital, get weaned off most (if not all) of medications in order for the seizures to start again.  Then he would have a follow up SPECT test and another different kind of MRI.  Once these tests are complete, Dr. Akman will present him for surgery some time in June. 

This is all very good news.  The best news is that she does not think there is any need for the horribly invasive SEEG test (electrodes directly on the brain).  She thinks this is way too much stress for him and we agree!

I took this picture of her computer.  It shows how high resolution the MRIs are getting! The image on the right shows how little of the right brain remains. The little sliver in the back is likely what is causing all the new problems. 

We are all still a little concerned about the headaches.  Byron is still very uncomfortable most afternoons, in need of an ice pack on his head and a long nap. Dr. Akman wants us to keep her updated about these going forward.  They concern me a lot and they really limit what Byron can do during the day.  

Normal Day :)

It was nice to have a normal family Saturday.  Byron really wanted to see Paddington in Peru so we traveled to Middletown and had Indian food and then watched the movie.  (great movie BTW) 

Byron was ok in the car on the way down - chatty and happy.  We gave him his medication right after lunch and then watched the movie.  On the way home in the car he was suffering.  But when we got home he did not throw up which is progress.  He slept for about 90 minutes and then was ok again.  

I'm not clear why each time we drive home from any activity or appointment his body goes into disequilibrium. Maybe it's the motion of the car, maybe it's exhaustion - really no idea.  But today was better.  All in all it was a GOOD day all things considered.  

The Long Haul

This weekend I was supposed to go to Florida for a visit with a dear friend.  But I had to cancel it because what is going on right now is really a two person job.  Bob does all the medicines, of which there are 5 in the morning, 1 mid day and 3 at night (with multiple pills for each). Byron can't really swallow pills so there are all kinds of work arounds that Bob has figured out.  Some go in pudding, some gets split really small, then there is a strong cranberry drink Byron takes after the liquid med so that he doesn't gag on the taste. 

All these medications have side effects including loss of appetite, emotional issues (anger, aggression) and of course they all bring on fatigue. He gets fatigued extraordinarily easily.  Yesterday he had one hour of school and a voice lesson and that was too much.  

For me there is figuring out what kinds of foods Byron will eat.  He has little appetite, The last two nights I cooked dinner for him but he couldn't eat it. 

The pain in his head and abdomen seem better.  He now has two incisions in his abdomen and one in his head near the back where they put the shunt in. They all seem good and healing well. 

Our meeting with his doctor is on February 13.  Our new goal for this meeting is to see if Byron can be admitted during his spring break (rather than waiting until summer) for the SPECT test and the SEEG.  The SEEG is a very invasive test that will tell them exactly where the seizures are coming from. In this test the electrodes are placed directly on the brain.   The goal for both tests is to see if he could be a candidate for another (and hopefully final) surgery to remove whatever is still seizing.  And most hopefully, that the good side of his brain is NOT seizing.  When we left they told us that they were seeing the beginnings of that possibility, which is not good news.  The surgical outcome would also be that he can get off these awful medicines. 

And of course there is watching him like a hawk, hoping that there are no sudden trips to the emergency room. Checking on him, his symptoms, making sure he stays stable and rested.  He needs a nap every day but feels really weird afterwards.  He describes it as his brain being out of sync with his body.  So there's that.

Of course we are in this for the long haul, but the surgical option is still the light at the end of the tunnel.  We still are hopeful that he can go to college in the fall and so we work towards that.  But I do hold that goal lightly right now.  Bob holds it more firmly.  But we are on the same page with most things so that is good.  We need to be a strong unit right now, for Byron.