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. 

Much Better Today

The thing about having a medically complex child is that it is just that... complex.  With the addition of Hydrocephalus to the list of things to watch and learn from, it makes figuring out exactly what is wrong difficult.  Is it the shunt malfunctioning?  Is he having a seizure?  

Yesterday Bryon was in excruciating pain most of the day.  He had a terrible headache and vomited.  Last night was quite awful.  I was tossing and turning having no idea what was going on.  Would we need to go back to the emergency room?  NO idea.

Today he woke up just fine -  chipper, happy.  He said yesterday was just a "stress headache" and he vomited because he got really car sick.

Hmmm...ok.  I truly hope that is all it was. 

Hoping for Better Days

Byron still seems unwell.  He has a severe headache and vomited on the way home from lunch. He is very aggressive and angry today.  I will keep a log of these changes to see if there are any triggers.  Apparently (learning from my new support group on Facebook) that shunts are very sensitive to barometric pressure.  Friends I know who get migraines say the same thing.  The sky is dark and we are about to get a snow storm.  Maybe that's it?  He's asleep now, in the middle of the day which he NEVER does, so I'm hoping he will feel better soon. 

New Support Group

Support groups have been one of the most invaluable resources on this medical journey thus far.  At first it was CHASA - The Children's Hemiplegia and Stroke Association, that guided us through the beginning of our journey. It was a simple Yahoo list serve then, but being able to ask questions of other parents and hear their stories was invaluable.  We went to two CHASA retreats that were simply incredible.  It is/was wonderful  to hang out with other parents and children who are going through exactly what you have experienced.  

Then when seizures reared their head, we found great resources with the Pediatric Epilepsy Surgery Alliance.  We almost went to their retreat last year in Boston but had a scheduling conflict. 

When I was diagnosed with Acoustic Neuroma- the Acoustic Neuroma Association was so helpful. I have attend webinars, Zoom support groups, and have spoken to those newly diagnosed through connections mades through this organization. 

Now - on to hydrocephalus! I joined their national group and lo and behold, there is a meetup in NYC in February.  So happy to be attending with Byron and Bob on Sunday February 23 at the Sugar Factory on 8th avenue. 

All of these groups interact through Facebook online communities that are easy to access, post, reply and search.  Say what you wish about Facebook but it is an invaluable resource if you are looking for communities such as these.  

Looking forward to this next meet-n-greet!

Byron is Home

 All is well. Byron’s stomach and the incisions hurt but otherwise he is doing great. Crazy 48 hours! 

Byron Released!

 Bob and Byron are on their way to our apartment in Washington Heights for a well earned rest. Byron reports he has no more pain!

Out of Surgery-All is Well

The surgery was a success. Byron is in recovery. I had a chance to speak to him. He’s uncomfortable because they intubated him. He says the thing that hurts the most is his throat but that is to be expected.

They were able to fix the shunt without going anywhere near his head.  They did everything they needed to do through the abdomen. They said if he’s feeling up to it he can go home tonight. Otherwise in the morning.  Picture below of Byron just now. 

Going into Surgery Now

So they found the problem. Phew!  The tube from the shunt was curled in Byron’s abdomen and this was causing the pain and improper drainage. They are going in now to fix it. They will use a new technique they developed to secure the tube to a tendon (I think) so it won’t move so much. Why they didn’t do this before I don’t know.  But it is possible that he could be home today!

Back in the Hospital

For a few days Byron has been experiencing severe pain in his lower abdomen.  Yesterday he started having headaches, like before the shunt placement i.e. sharp pains above his eyes.  We spoke to the surgeon's office and they encouraged us to head to the emergency room at NYU Langone.  So Bob and Byron went off last night.  They checked in about 10 pm and have been up all night since. The doctors in the emergency have done of lots of test with no definitive conclusions.  They are goin to admit Byron this morning and do a dye test with the shunt.  This will tell them how fast it is draining and if it needs to be adjusted. More soon...

First Day Back at School

Life returns to a new normal.  Byron had a good first day at school today.  The kids made him a big welcome poster and he was very pleased at how the teachers are accommodating him.  

Also our beloved Nana/Charlotte/Mom-in-law has returned to sunny Florida just in time to escape from the new snow here.  Her flight was delayed four hours so she got it at the unholy hour of 1 am but we are so happy she made it safely.

I won't be posting here every day now as things are going to hopefully get a bit low key.  But if there is something to record I will surely post it.  Thank you for accompanying us this far on this wild and crazy adventure.

Happy

Byron is happy to be home.  He's playing his video games, even going on line with friends to chat while playing.  He is smiling and seems comfortable. He's a bit more listless than normal but not so much that he is sleeping all the time. 

Taking the multiple medicines is challenging for him.  The Keppra is 10ml in liquid form which tastes awful.  He is taking the liquid form as the Keppra pills are too big for him to swallow.  He is having trouble swelling the other 6 small pills.  He can get them down but it takes a really long time.  But if that is our only hiccup we'll take it!

Byron goes back to school on Tuesday.  The school has been very helpful and cooperative.  The school is structuring it so that Byron only needs to take two courses this semester to finish high school and his Associates Degree.  This is partly due to the fact that he worked really hard last semester.  And according to his doctor he did this while having seizures and hydrocephalus! Because of the light schedule this semester, he only needs to be in attendance a couple of hours a day on Tuesday, Wednesday and Thursday.  He will graduate on time with a Certificate of Completion.  He will not receive a Regents Diploma as taking further Regents tests will be way too stressful for him.  Regents are three hour long standardized tests on different subjects. The colleges he is applying to all take the certifcate  diploma so it is no problem.

Byron is Home

He looks more tired than I have ever seen him.  He has very dark circles under his eyes and his is pretty grouchy.  Now the glue removal protocol begins.  His hair is thick with all the glue from the multiple EEGs he had.  It's a multiple step process of baby oil, dawn liquid, shampoo, conditioner, fine tooth comb out and then repeat.  It is amazing how tenacious the glue is.

We are hoping he can go back to school on Monday.  Hopefully the rest of the week is resting and getting acclimated to a three times a day medication schedule. :(

Byron's Coming Home!

After his SPECT test this morning we learned that this was likely the first of many tests that would be required before a decision could be made if surgery was an option.  

This would mean Byron would stay in the hospital with an unknown outcome.  The additional tests required are another SPECT test done off all medications (so he can start having seizures again), and an SEEG which is a very invasive test where they put electrodes directly on Byron's brain through the skull.  Both of these tests have risks, the biggest risk is that once off seizure meds, we may lose the good control we have now.  Seizures are finicky and if they get active again, they may be more difficult to control.  And this is a HIGHLY undesirable risk at this time, now that he is stable. 

Soooo... it seems the best option is to take Byron home on all these meds, and let him return to school and finish out his senior year.  It may be hard for him, he will get tired more easily, but the school has been great and I am sure we can work something out.  

We are all actually pretty relieved.  Byron can completely heal from the shunt surgery he just had, before we add any more stressors to his system.  And the seizures are controlled for now so this is a win.  

It could be as early as tomorrow that the NYU satellite team; Bob, his mom and Byron come home to the frozen tundra :)

Morning!

 This kid amazes me. He can still smile easily and doesn't complain (much) :)

New tests start at 10 am.  Hopefully more updates soon.

SPECT Test Tomorrow

Today was low key. The EEG leads were removed and seizure meds stopped. This is all in preparation for the SPECT test. Google tells us :

A single-photon emission computed tomography (SPECT) scan is a nuclear imaging test that helps identify the part of the brain that causes seizures. It's often used to diagnose and treat epilepsy. 

How it works

-A radioactive substance is injected into the patient's vein. 

-The substance travels to the brain, where it emits gamma rays. 

-Cameras record the gamma rays to create a 3D image of the brain. 

-The scan shows which areas of the brain are more active during a seizure. 

They will take Byron off all meds today so the seizures can start up again. I think it will be a tough night. But then tomorrow someone will sit with him all day and push a button whenever he has a seizure. This will create a 3D image of wherever the seizure is coming from. 

In other news, this fellow came by today. I understand he was quite charming.  

Sunday

Sundays in the hospital, especially on a holiday weekend, are a bit zzzzzzzz. But Byron appears to be doing a bit better today, partly because his beloved Nana is here. She will be here for a little while to help out wherever needed. She is the spryest 90 year old I’ve ever known (ok soon to be 90). 

Just saw the surgeon

Dr. Hildago only had a few seconds to talk but I asked her the question that I had;  if the seizures are controlled, does that mean surgery is off the table for now?  Her immediate reaction was "No way! He can't  leave the hospital like this."  

We discussed that the seizures are controlled but the medicines are debilitating him.  She had to leave but it was another perspective on this. 

Byron just said, "Mom this is worse than all the brain surgeries combined."  He's dizzy, can't keep his eyes open and is nauseous.  So we are back to the long haul thoughts for now.  But it's only half way through Saturday. 

No Seizures!

This is a happy update.  Byron has not had a seizure, either clinical or subclinical since yesterday noon. So now there are decisions to be made. Byron is on VERY high doses of three medications:  3grams Keppra, 200 mg Vimpat and Depakote.  He is groggy and sleepy.  Also the MRI showed exactly where the seizures are coming from which is good. 

Now - do we let me go home on these medicines and finish out the school year and then look at surgery?  Or do we push for the surgery now, hoping that this will end the seizures once and for all and he will have to deal with school once he recovers?  Or is surgery off the table now and maybe that's a good thing?  

The issue is that I don't know how much school work he can do on these meds.  Maybe he will get used to them?  He has been on Keppra and Vimpat before in 2022 and tolerated them pretty well (lower doses).  He was awake and alert on these meds when he left the hospital then. So I'm not sure what is up.  He also had a brain surgery just a few days ago to put the shunt in so maybe that's it?  These are questions for the doctor that we need to remember to ask. 

Bob comes down today with his mom Charlotte.  Then I go back upstate for a few days. 

The Long Haul

Time to start thinking about the long haul. If Byron does have surgery on Friday that means we will be here at least another two weeks. That thinking helps to manage what you bring, how you create an easeful schedule for everybody. How is this going to impact his final semester of high school if he needed to take another month off?  All these things will get sorted I’m sure .

It’s actually quite comfortable here. I slept well last night and so did Byron (short of being woken up every hour with cognitive questions such as “do you know where you are”).  

Great bagel shop across the street too! Weekends in the hospital are slow so I’m not sure how much new information we will get. Byron is still very groggy but I did get him to smile. 😊 

This morning he said “Mom I just want to thank you for taking care of me and loving me for 17 years.  It must be hard. I’m disabled. For most kids it’s just falling off a bike”  It’s true this all is a little stressful but falling off a bike can be hard too.  We spoke a bit this morning about staying grateful, and about letting things that you have no control over just unfold-without worry.  He’s stressing about school mostly and I assured him that it would all work out.  

Surgery and Other Updates

Byron is off to his high resolution MRI.  He hasn't had any food or water all day so he is looking forward to a smoothy or a burger when he gets back.  He seems much better today.  Although this morning he said heartbreakingly, "Mom - I can't live like this."

It seems like the medicine that was so toxic for him last night is wearing off.  He is now on 3,000 mg of Keppra and 400 mg of Vimpat per day. These are high doses but they do seem to be making some improvement.  The idea of a new weekend medicine and the intubation  is now off the table.  These other meds seem to be starting to work. They are not getting rid of the subclinical seizures, the seizures that have no overt outward effect, but the outward seizures are less. 

Dr. Heldago has booked a surgery room for next Friday. Byron's case will be presented at their Neuro conference on Wednesday.  If the surgery needs to happen sooner she can do it, and even though we don't know yet what kind of surgery he will have, she wanted to be ready.  I really like her!

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