The Seizures Return

 Sorry in advance, this entry is LONG. 

 

It’s been a banner year for Byron.  He graduated 9th grade from CCHS,  a collegiate private prep school with top marks as well as college credits in Writing and Spanish. YAY!!!

 

The next day after school ended, he started to complain of headaches upon waking.  They were severe enough that he needed to take Advil and stay in his room until they dissipated.  Then he started to complain of something he called “fatigue”.  He said he was having fatigue and that it was severe.  But when pressed he said the fatigue was short and came and went. This was suspicious but we weren’t sure really what he was talking about.  The headaches became so severe that Bob and Byron went to the ER at Morgan Stanley Children’s in NYC on Saturday June 18, to have them checked out.  The on-call doctor was worried about hydrocephalus.  This is an increased pressure in the side of the brain with the hemispherectomy surgery (right) caused by buildup of fluids. This can actually be fatal if left untreated. After 7 hours in the ER and an MRI with DTI contrast  - using this technical terms for my records   - they found no evidence of Hydro so they let them go.

 

Headaches continued.  “Fatigue” continued.  On Monday June 20, Bob was teaching Byron to drive at the college. I was in the backseat.  Bob said, “Make the turn here into the parking lot”.  Byron said, “I can’t I’m having fatigue”. I explained that you don’t usually just have sudden fatigue and asked him what else is happening? And that’s when he turned to the back seat and I saw it.  Both of his eyes were locked to the left.  He was conscious but he was having the classic focal (partial) seizures that he has been having on and off since he was a baby.  These are not the seizures that precipitated the hemispherectomy.  That was ESES (electrical status epilepticus in sleep), an extremely rare form that exhibits as constant subclinical seizures.  ESES was causing him to regress developmentally.  

 

After getting a few more of these episodes on video (they were happening every fifteen minutes), Monday evening I called the Columbia doctors answering service.  I spoke to a lovely neurologist who told us that we need to come back to the ER.  There was no rush but to arrive to the ER Tuesday morning, June 21.

 

So off Bob and Byron went again (so glad Bob is retired) and I stayed home to hold down the home and work fronts.  

 

My position is permanently remote so it is perfect!  There is so much good fortune and Grace in everything that happens in our lives, in all these situations. Even through the outer circumstances seem difficult, everything aligns to make dealing with them very easy.  For example we don’t have to worry about insurance.  Everything is fully covered because of Byron’s Medicaid (we never see a bill). This is not so for many children. Our son and daughter-in-law Ryan and Regina, now live very close to the city with a direct train, so the car could be left with them and the trip could be made without driving and parking in NYC. Bob is retired so he can fully take this on.  It’s all good! 

 

 

They finally admitted Byron.  It took them nearly eight hours to get a room from the ER but Bob and Byron remained in good spirits.  When I called they were watching “Jaws” without sound.  

 

When they finally got Byron hooked up to the EEG at around 5pm they noticed he was having what they called “Cluster Seizures” seizures that happen one right after the other.  AT 6 they gave him 1000mg of Keppra via IV, and then at 10:45 pm they gave him Ativan 2mg via IV.  Byron slept well.  Bob did not. There was a child who was having a hard time overnight so there was constant sound.  They made funny clown noises at the front desk to sooth the child (Children’s hospitals are amazing)  but Bob was kept awake by the crying and the clown sounds. I should say that they are not on the epilepsy floor - not sure why. The epilepsy floor is pin-drop quiet.  I do hope Bob asks about moving.

 

In the middle of the evening last night I emailed Byron’s surgeon to let him know what was going on.  I got a short email this morning that he would try to stop by the room.  This morning, I was able to be on speaker phone in with the doctor on call (not a neurologist).  Apparently, all the seizures are arising from the disconnected right side. She was not a nuero so she couldn’t give us any more detail.  Hesitantly I say, this is good news.

 

There are three things I see coming and questions we will ask when the Neuros come around about 11. 

1)    If these are all coming from the right side, was there a missed connection that you couldn’t see on the MRI? Sometimes even if there is tiny bit of tissue left connecting the right to the left, this makes a successful bridge for the seizing side to affect the “good” side.

2)    If you determine this is the case, is another surgery on the table?

3)    Is an “anatomical” hemispherectomy an option?  I have communicated with several Mom’s of kids who had to have the entire disconnected brain removed from the skull cavity as it just couldn’t be trusted in there to stay. This has stopped all seizures. Byron’s was a “functional” hemispherectomy where the brain is left attached to the blood supply. There are more risks to this procedure however, including higher risks of hydrocephalus.

4)    If we try medicines, what are the side effects of being on multiple seizure medicines for something that can be remediated surgically.  Byron failed three medicines, Keppra, Trileptal and Onfi,  before his surgery (failure means they don’t work as expected or cause terrible regression or behavior problems). Frankly we are not that eager to go down the “try and see” with multiple strong medicines.  But let’s see.

 

To be continued…

 

Tendon Transfer

 On Thursday May 5 at Maria Fareri Children’s Hospital in Westchester, Byron underwent a Green Tendon Transfer, elbow release and some additional hand and wrist surgery on his left arm.  For the first time, among all the various surgeries and procedures he has had, this surgery was Byron’s choice.  

 

Last month Byron saw Dr. DelBello to discuss his scoliosis.  Byron’s pediatrician wanted Byron to be looked at because almost all children with Hemiplegia have some sort of scoliosis.  The doctor was not at all worried about the scoliosis but remarked that he could do some surgery on Byron’s left arm to make the placement more natural and the hand more relaxed.  Dr. DelBello said it would be largely cosmetic, but it might give Byron a bit more functionality in that hand.  Byron was immediately eager to have the surgery if it could be completed before summer.  With Byron’s great luck, we were able to secure a date where the cast would be off before mid-June.  After the cast is removed Byron will need 12-20 weeks of therapy twice a week to ensure that the new placement remains and to tease out some more functionality.

 

The surgery was a success!  The surgery was late afternoon. All told we were at the hospital just under 6 hours including recovery time. The anesthesiologist gave Byron a nerve blocker before he woke him up, so his arm was numb until about 4 am the next morning.  Then the pain really kicked in.  He was on Motrin, Tylenol and opioids for the first day.  Today we will no longer give him the opioid.  He seems to be doing fine.  It’s pretty uncomfortable but Byron thinks it was still worth it.  Before and after pictures will follow.

Waiting for the Surgery

The Beautiful Hospital - Very clean!

After the surgery, waiting for him to wake up.  He woke with a start and was VERY grouchy!

Home an happy with a very late dinner of Taco Bell.

The next day - brave and smiley as ever!

Ablation

Sweet Byron, who has lately been a very healthy guy, will be having a heart procedure called an ablation on Tuesday August 24. In February of this year (2021) he developed tachycardia, a condition where his heartbeat would reach about 245 beats per minute and last up to an hour. This has happened a few times since then.

Dr. Silver, the Pediatric Cardiologist at Morgan Stanley Children’s Hospital in NYC, assures us that the procedure is straightforward and has a 95% success rate in teenagers. (Success means the episodes cease and do not reoccur). Byron will be in the procedure room for 2-4hours with a recovery time of 4-6 hours. He should be released that day.

With everything Byron has gone through health wise, this seems like a blip, and still - blessings are much appreciated. He starts his new high school on September 8 so we would like everything to be terrific by then.

Quarantine Goals – Couch to 5k

The last time Byron, Bob and I were out in a crowd of people was Sunday March 1 for the Washington Heights 5K (3.11 miles) run in New York.  Byron ran it with his brother Ryan and finished it quite respectably. 

And then the pandemic began in earnest.

As we quarantined at home, even though it was relatively cold outside, I encouraged Byron to continue his running training.  Byron had mentioned that he might want to run track next year at school so training would be important. Every few days Byron would go out and run with the dog. One day I went with him.  I found out his “training” consisted of running full speed for about 100 yards and then stopping.  I knew that if another 5k or longer was in his future, we needed to develop a proper training regime.

I found an app called C25K which stands for “Couch to 5k.”  It promised to get you from sedentary to running a 5k in 8 weeks and what’s more, it was free!  I decided to not only encourage Byron to do the program, but that I would do it as well.

I ran track while in school but always the fast, short sprints.  I had tried to take up longer runs many times, but like Byron, I would run for 100 yards and then give up.  Now I was going to give it one last try.

Byron and I started the program on May 1, just as we were getting the most intense cabin fever after 6 weeks of lock down.

On our first day we were both euphoric.  It was so fantastic to be outside moving our bodies under the wide blue sky and just being with each other.  If you have a 13-year-old, you know how hard it is as a parent to spend any meaningful time with them in this digital age.  So this first outing was full of win-wins.  We talked.  We walked for 5 minutes, ran for 90 seconds, walked again and on like that.  The running part was tiring, and after the short runs we were both so grateful for the walks.  

Each week the training program upped the ante.  Byron and I both have apple watches so we could run the program on our watches.  The program would tell us via the watch, when to run and when to walk.  One day the program surprised us by introducing an 8-minute run in the middle of the week.  We both thought it was a mistake but sure enough, it was upping our game.  It went on like this for a few weeks. Along the way, I had many setbacks.  Not having run like this, ever, my knees ached, my ankles ached.  I almost gave up at least three times.   A couple of times we repeated a week.  Byron never seemed to have any problems and he was patient with me.  Finally, I found the right combination of knee “sleeves” (laced with some heat producing elements and mild support) and a single ankle wrap that alleviated all of the pain and discomfort.  We were now moving briskly through the program.

The eighth and last week was about to begin.  I looked at the map they were giving us for our first 23-minute run and realized that even by the end of the week, we would not really be at a 5k.  I wanted to be sure we could make it all the way.  Byron and I traced a solid 5k on the map, and at 6 am one morning, even before the app was calling on us to run such a distance, we took a leap and ran the course.  And we made it!   We ran our first 5k.  From then on, we ran without the app, and now we run a 5k before breakfast three times per week. We no longer speak on our runs, we both have our music, but we smile and cheer each other on.

One of the most rewarding things for me is watching Byron run ahead.  

He is a bit faster than me, yet even with his slightly awkward hemipalegic gait, it is a wonder to behold.  Flashing backwards 13 years to that fateful diagnosis day, wondering if he would ever talk, walk etc, I could NEVER have imagined I would be running with my 5’7” thirteen-year-old with the deep voice.  And running an entire 5k race three times per week!  

After our first 5K Run

Byron continues to be a wonder and I am so grateful that he is taking us on this great journey with him.

Pandemic Thoughts

This morning as I was making my bed, a wave of sadness swept over me.  I thought: here we go again, another day inside, dark times around the world with no end in sight.  And then very gently, a quotation bubbled up inside “This is the day the Lord has made. We will rejoice and be glad in it.”  I don’t usually think in Psalms, so I sat down and let its message wash over me.  And in that reflection, I realized, This IS the day the Lord made.  This particular day, in the middle of a pandemic, is still God’s perfect creation, a glorious day full of wonder.  How I rejoice and be glad in it will depend on how I choose to approach it.  What will I learn today?  How will I find beauty?  How will I hold on to the sweetness of morning meditation?  How can I serve more fully?

Then I remembered when I was pregnant with Byron, my Spiritual Teacher Gurumayi gave me a red bracelet that said “Choose Happiness”. So I went to look at it. As I was remembering the joy of that interchange, the day she gave it to me,  I realized that these times right now, are the exact times when I must choose happiness.  Even when it’s really hard.   

If I look for it, it is there. The birds in my yard are so happy right now.  They are flitting around building nests, preening in the sunshine.  The squirrels are happily munching on seeds from the feeder.  My dog is snoozing in a warm patch of sunshine.  Perfection.  Happiness.  

Byron is flourishing in his virtual school.  He continues to be on honor. role, is healthy and strong, and a typical 13 year old. Our house is warm, comfortable and easy to be in for long periods of time.  We have abundant nourishing food.  And I am so spiritually renewed by the satsangs live streamed from the Ashram where I offer service. 

I realize that I also can pick and choose what I focus on in the news.  There is so much goodness everywhere right now.  Heroes are being made from these times.  True leaders are emerging. The creativity of the musicians, artists, actors is staggering.  And the sweetness of calls and Zooms with friends and family can’t be beat.

I was taking a walk with Byron the other day and I was truly enjoying the sun on my face.  A feeling of warm bliss overtook me.  I hadn’t remembered being so present to myself and my surroundings on a walk in a long time.  And on that day I realized that I am changing. I am slowing down. I am appreciating the tiny movements of life in ways that I hadn’t so much before.  I am appreciating my family, good health, and moments like these.

So onwards! I will Choose Happiness.  Every day, Each day, This day!

Another Article on Hemispherectomy

This just published today in the New York Times!

How the Brian Can Rewire after Half Removed

Good Article about Hemispherectomy from The New Yorker

I'm glad I didn't read this before Byron's surgery.  It's the most detailed and graphic article I've read about Hemispherectomy.  It's from 2006.  Most people don't know that Ben Carson was a pioneer in this field.  From the article:

"No brain surgery is as dramatic as a hemispherectomy. “A hemispherectomy is the opposite of everything you are taught in neurosurgery,” Jallo told me. “You are told throughout your residency training to preserve the brain, get what you have to get, do your work and leave, but with this you have to take out everything along the way." 


New Yorker Article - "The Deepest Cut - How Can Someone Live with only Half a Brain"

Brain Surgery Recovery...There is so much unknown...

The folks who started the Brain Recovery Project (amazing folks we got to know at last summer’s Hemikids conference)  just held a major meeting on hemispherectomy and other brain surgeries for epilepsy. It was groundbreaking as it included medical and science professionals as well as parents.

I am amazed at how little is still known about cognitive and behavioral outcomes after this surgery.  When we asked about Byron after surgery, “will he walk, talk?” all the doctor would say to us is "we don't know - probably."

 Here’s why...there is so little research about outcomes after epilepsy surgery. Yet more and more of these surgeries are being performed.

Here is the link to info about the meeting/conference.  It looks like it was a great step forward.

https://www.brainrecoveryproject.org/research/functional-impacts-of-large-resective-disconnective-pediatric-epilepsy-surgery/

Byron Excels in 7th Grade!

As we approach the two year anniversary of Byron's hemispherectomy, we were never more certain of it's success than last night at Byron's 7th grade open house.

November 3 marks the two year anniversary of  the surgery and of Byron being seizure free.  November 3, 2017 was the date when they disconnected the right hemisphere of his brain and changed him forever.

Just before the surgery we received a call from his 5th grade teacher.  She told us he was unteachable and could not learn.  Two years later this same teacher is his mentor in the LEO club where Byron does volunteer work for his school's community service program.  Last weekend Byron was a waiter at a benefit for a child with cancer.

Yes Byron is seizure free, but he is also more verbal, more social, makes great eye contact and can hold a back and forth conversation with more than one exchange.  And what is most remarkable is that he can focus.  Every teacher since kindergarden  has talked about his lack of focus and limited attention span.  Yesterday as we approached  Byron's math teachers, Byron's most challenging subject, we expected to hear the usual, "The problem is he rushes, can't focus etc."   This was the case even last year.

As we sat down, the first thing the teacher said was, "Byron is so great.  His class participation is amazing. Whenever we ask a question we can alway rely on Byron to raise his had and try to give the answer."  She went on to say "And Byron's FOCUS is incredible!  He can really stay on task."

Bob and I both shook our heads and said, "Wow! That is really quite remarkable."  Both math teachers asked why we would say that.  So I took a deep breath and told them the abbreviated version of Byron's story.  Both teachers had moist eyes and one said that she had chills all over her body.  They were so grateful that we told them.

It seems that Byron has made the transition to middle school with great aplomb.  In his progress report he is getting above 80 in all classes, including math.   The other remarkable thing is that he is getting a 97 in PE!  We met his gym teacher who is a truly wonderful man.  I said to him that for a child with a disability, gym can be torture.  The gym teacher was clear that Byron is doing wonderfully.  He tries everything and when he can't do it the teacher makes modifications. We also learned that there is an adaptive PE program, but Byron excels so much in regular PE that they have kept him there.

Every teacher we met said how kind and happy Bryon is.  The assistant principle said how much he enjoys seeing Byron in the halls as he is always smiling.  Again, this was not so before the surgery.  I remember Byron's 4th grade teacher saying she wished Byron would smile more in school and be happier.

Any doubt we had about this school are completely gone.  It is absolutely the right place for Byron.  And we are so very happy to see and hear how well he is doing from all these fresh eyes.  In many ways we weren't even aware of how far he has come, as the change is incremental to us.  But seeing it reflected back last night was quite remarkable.  So many blessings!

Demonstration Child

Today Byron was the demonstration child for a large gathering of Physical Therapy professionals/students at the Center for Discovery in Hurleyville.  He delighted the students by singing songs for them while he was being treated.

Byron sang an excerpt from the opening of Sponge Bob the Musical at the end of the session.



And finally, one of the therapists attending today, worked with Byron in Ithaca when Byron was four. She let us know about the death of a very special person: 

RIP Kathy Schlough - 1952 - 2018

Kathy was Byron's first therapist after his diagnosis.  She had been the head of the Physical Therapy PhD program at Ithaca College and had just left there because she missed working with children directly.  She was an invaluable guide, friend and mentor during the early days of Byron's diagnosis.  She was an amazing artist and we have two of her paintings in our home.  We were stunned to learned that she died from cancer in May of this year at 66.  Dear Kathy, you will be missed by the hundreds of children and their families for whom your calm and steady presence was a great comfort.

The Journey is Almost Over

We had our 10 month check up after Byron's hemispherectomy.  This is the first time we have seen his neurologist since the surgery on November 4, 2017.

She reviewed the MRI and the overnight EEG and confirmed what we suspected - Byron is seizure free! At least for now, and hopefully forever.

We are going to begin to ween off all medications starting today so that by the one year anniversary of the surgery, he will no longer be on any seizure medicine.

Then we will do one more overnight EEG to confirm that even without medication, he is seizure and ESES free.

She also asked several things of us: if Bob and I would speak to other patients and parents going through the same thing, if Byron would speak to a large conference of nurse practitioners in a few months, and if Byron would consider being in one of the commercials for the hospital called "Amazing Things Are Happening Here."  We said we would be willing to consider all and to stay in touch.

She also told us that because of Byron, she spoke to the director of the hospital about being more aggressive in letting people know that the hospital does this type of surgery.  Last year we told her that when we were first looking for hospitals for this surgery, Columbia never came up on list-serves, parent groups or seizure blogs.   She said then, that she wants to change all that, and today she confirmed that the hospital was moving in that direction.  That's really great news, because Columbia really is a good place to have a Hemispherectomy.  And in partnership with Blythedale for rehab, it makes it very easy to go through the whole process.

Byron Made Honor Roll!

There is so much good news it's hard to know where to begin!  Byron made Honor Roll this quarter!  There will be a ceremony at the school on February 21 at 9:30 am where all the honor roll kids will get a special certificate from the Superintendent.  I really didn't think this day would ever come, even without the surgery.  Byron was getting anywhere from 35 -65 on most tests last year and through this fall until the surgery.  Since the surgery, his overall grade in math went from 60 to 90 percent.  English and language arts went from 61 to 85. Truly amazing - way to go Byron!

Byron also had follow up appointments this week with both his neurosurgeon and the epilepsy specialist.   Both were incredibly pleased at the way everything is going.  Byron got a "gold star" from the neurosurgeon Dr. Feldstein.   The Epilepsy doctor, Dr. Ackman, thanked Bob and I profusely for our perseverance and fearlessness.  We thanked her for sticking with us and taking us through to the end.

Byron is so much happier overall.  Every day since the surgery he shows new enthusiasm and improved social skills.  We had a follow up appointment with his Physiatrist, the doctor who prescribes his braces and manages the leg and arm spasticity.  She was shocked when Byron came in and immediately told her a joke.  Byron has always been largely uncommunicative with her until now.  Byron continued by dancing and singing for her and answering all her questions.

Byron has always been a great kid, but now he is truly Byron Gamer PLUS! 💖😁😍

Homework Heaven!

For the past two years, homework was the time of the day I truly dreaded.  I knew how smart Byron was but it wasn't appearing in his school work and even less in our homework sessions.  He could not follow a problem that had more than two steps and word problems were impossible.

For example, trying to explain the steps of long division, with it's multiplication, subtraction and precise number placement was almost impossible.  Just when I'd think he got it, he would completely forget the logic by the next problem.  And he could not keep focused on the task for more than a few seconds. The whole exercise, repeated daily with different sorts of math and reading, were incredibly stressful and very sad for me.  And likely worse for Byron.  But Byron was always adamant about completing his homework so we slogged through it.  Often at the end of a session, I was exhausted.

You might ask why I cared - long division who cares!  These kids will just use computers or ask their Google Home!   But his lack of ability to follow sequential steps was a clear indication of how the seizures where effecting his brain.  I thought that if I kept at it, if he kept at it, some how it would ultimately be good for his brain.

Fast forward to today.  Today was Byron's first day back to school after the surgery.  When I picked him up he was smiling, happy and at ease.  This was a HUGE change!  Before the surgery, when I picked him up he was surly and difficult.  Today he was smily and friendly.

And then we had our homework session.  It was two pages of long division.  It has been at least two months since we worked on long division and I readied myself to have to teach it again.  But Lo!  Byron remembered the rules.  And he approached his homework with ease and focus.  He made the small mistakes that any child would with such a complex task, and his handwriting is still miserable, but it was like I was working with a different child.  We got through all the problems without frustration and he remembered the logic and the steps.  And, he could do things in his head that he could not before.  For example when we were working on how many times 52 goes into 367, I taught him how to estimate.  I asked him, "How many 50s there are in 100?" He said 2.
"Ok then how many 50s are there in 300."  He said 6 - right away!  So then I asked "How many 50s are there in 350?"  He said with great enthusiasm. "6 and a half! "  I laughed and understood how his mind came to that logic but we NEVER could have gotten that far before.  It was brilliant and exciting and I was exhilarated.

I am in awe of how this surgery which took half his brain, has made him whole again.  Byron seems to now have access to his heart and mind in ways that were not possible during the last two years.
And we all couldn't be more pleased! 💖

At 6 Weeks Post Surgery

It's amazing that it has only been six weeks since Byron's surgery.  He is doing so well it is quite remarkable!  We have not seen any evidence of seizures which is amazing in and of itself, but Byron is SO much more present, alert and happy.  I imagine that, for him, there was a constant static or interference going on in his brain due to the malformation and spiking occurring almost constantly in his right right hemisphere.    Now, with a quiet brain, he can connect more with his heart, his good feeling and hopefully his intellect.  We have had a hard time getting the tutor here, she has missed two weeks already, but she is scheduled again to come on Monday.  I hope to hear from her that his academics are improved as well.  Byron has told us in the last two years that he "hates" school. I believe this is because, once the seizures started, it was simply exhausting to focus.

Here is a little video interview done today:

CHASA Family Retreat 2018

In 2010 we attended a retreat for families of children who have hemiplegia.  It was sponsored by CHASA, Childrens Hemiplegia and Stroke Association, a lifeline for us when Byron was first diagnosed.  Over 500 people descended on a town in Alabama for the four day conference.  100+ kids and teens with Hemiplegia, caused by stroke, attended.  Byron was three so it was mostly interesting for Bob and I.  There were lectures, chances to meet successful teens who had developed excellent strategies for school and college, and it was great to chat with other parents dealing with the same issues we were.  We always said we wanted to go again.  And this year we want to go for Byron.

We think it will be great for Byron to see so many children who are just like him. They also have a sub group of children who have hemiplegia and hemispherectomy so he will meet other superheroes just like himself!  This year they expect "hundreds" of kids, teens and adults with hemiplegia.

The retreat is from July 8-11 in Denton Texas which is outside of Dallas.  Ahh July in Dallas -  but they will have a pool :)

http://chasa.org/chasa-family-retreat-2018/

PT and OT Begin

Byron had his first full day with no fever to speak of.  He went to 99.1 later in the day which is not bad, so I really hope we are getting on the other side of the fevers.

Byron started Physical Therapy and Occupational Therapy today at the Center for Discovery.  He will have 4 weeks of therapy there:  2 sessions of PT per week and 1 session of OT per week.   The Occupational Therapist said that she has worked with several children after Hemispherectomy and, like many others, said she could not believe how well Byron is doing.

Byron appears to be a bit looser in his hip and leg though, which is causing his toe to turn in rather dramatically.  They will work on this of course, but we are not happy about that.  They also said that he has lost most of the gross assistive function of his left arm, but they feel confident that they can restore that with OT.  On Tuesday he will be fitted, also at the Center for Discovery,  for new braces and splints -  a night leg brace and hand splint, and a day leg brace and hand splint.

The plan still is not to return to school until after the January break, and even then to only go for half day.  The focus for this time, and even once school starts, will be therapy

All in all, a good day!

Better today!

Byron had no fever for most of the day today.  This is great news.  I spoke to the surgeon who said we can just watch and see or start Byron on a low dose of steroids.  Apparently the fevers are caused by inflammation.  The inflammation will go down in time or can be sped along by the steroids.   It looks like today was a good turning point so we will wait on the steroids.  Other than that Byron remains in great spirits.  He even made a new singing video ;)

Temperature Regulator Error?

After a weekend of wildly fluctuating temperatures with no apparent end in sight, I'm wondering if Byron's system is having trouble regulating his internal temperature.  He does not appear sick, is as happy as ever and full of energy.  But the right lymph node is huge and hard, there is a slight ridge near the lower part of his incision and his temperature is all over the map  -  from normal to 101 to 99.3.  Tylenol seems to reduce it a bit but not enough.  I will call the surgeon on Monday just to check in. But I wonder if this is a temporary normal?

We've Got Your Back

I called Columbia today to discuss Byron's fevers.  I called a general number with no idea if anyone would call me back.  Within 45 minutes I had a call from a neurosurgeon, who said he would consult with Byron's neurosurgeon, who was doing surgery at that very moment, the day after Thanksgiving.  When I thanked him profusely for calling me back so quickly and being so readily available he said to me "We've got your back."  Phew - what a good thing!

Byron's fevers are all over the place today, 101, 99.5 and the up again.  The doctor said to start a Tylenol regimen and see how he does through the weekend.  They do not want to restart the steroids (thank God) and think it might resolve on it's own.  The key is that Byron seems fine, happy and healthy, just a bit hot.  His incision is amazingly flat and healed, he is not swollen too much, and the only thing that is a bit huge, is the lymph behind his ear.  But it's not sore.  So it's a mystery.

But now that I know that these big guns at Columbia have my back, and Grace is always present, I am much more relaxed tonight.  We'll get through this.

Fevers Fluctuating

Byron's fever is back up again - 99.4.  I have no idea why of course.  Just watching.  The number to watch on his discharge papers from the hospital is 101.  It hasn't risen up that high yet - fingers crossed.  Taking his temperature way too often :)

The Night Shift

Kudos to all Moms who get up in the middle of the night for feedings.  I forget the slam of fatigue one gets from the night shift.  But ALL IS WELL this morning.  Fever is back down and he seems better.  It was worth it.  Just five more nights 😝

Two Steps Forward - and then steps back

Byron was doing soo well, and still is in most regards -  but today I noticed he was a bit off.  Around 7:00 pm we also noticed that he was hot.  We tested his fever and it was at 100.9.  The lymph node behind his ear is also enlarged.  😓

Two things to note:
1) We stopped all the steroids on Tuesday.  Bob says he remembers being told that fevers can spike with a change in steroids.
2) Byron is on antibiotics and I hadn't wanted to wake him in the middle of the night for the fourth dose - so I was skipping that one - of course in hindsight NOT GOOD.

So I will obsess a lot over his fever in the coming days and hopefully it will come down in time. And -  I am setting my alarm for that 2:00 am dose tonight 😳

Noticeable Changes

Earlier today I asked Byron, as he goes about his day, to see if he noticed any changes since before the surgery.  Tonight Byron said  - "Mom, since my surgery I am more chatful, thankful and thoughtful."  A few minutes later he said "I'm more helpful too."  All of this is true.

He is SO much more "chatful" as he puts it.  Before the surgery there was a lot of vocalizing, random loud sounds.  Now, as his brain has less electrical activity, maybe those sounds are becoming words and thoughts, and they tumble out of him at a rapid pace.

I am so excited to see what else unfolds!

Welcome Home Byron!

Byron left the hospital yesterday in New York about 2:00pm.  All weekend he was determined to go home, told anyone who would listen that he was going home, and sure enough it happened!  It would have taken three-four days to get readmitted to Blythedale so we decided it was time to go home.  When Byron arrived at the hospital via ambulance on Friday, Bob forgot to grab his shoes and coat, so when we left the hospital Byron looked like this! (in my shawl and hospital socks)

But when we finally got home, after stopping at Blythedale via Uber to pick up all our stuff, he looked like this:

The journey is not over, it just relocates at home.  He will now have Physical Therapy and Occupational Therapy locally at the Center for Discovery and in January we will go back to the surgeon to have everything rechecked.  Then in about 6 months he will have an EEG to determine if the seizures are truly gone. If they are, he can be weaned off the seizure medicine for good. 💗

Byron may also get some home instruction this month and will start school again in January after the school holiday break.

Going Home?

Byron is incredibly homesick and is literally begging to go home.  I would really like to honor that if at all possible.  So I have asked if it would be possible to release him to home from here at Columbia today, rather than transfer us back to Blythedale.  I think Byron is ready, and I also think I am ready. When I say I am ready, what I mean is that I think Byron is medically stable enough for me to feel safe bringing him home. The medical facilities where we live are in general pretty good, but they would not be able to support Byron if something went awry when we got home.   But he seems good, the incision looks excellent and he is on an oral course of antibiotics for any further infection.

The team here has to evaluate him to see if he can go home and that includes getting a PT and OT evaluation.  I asked them why they needed that if Blythedale cleared him to go home on Wednesday and they just said it's procedure.

So it's Blythedale or home.  I hope to know soon.

This "Awkward" (Byron's word) Weekend Adventure

Precaution is an important word in medicine.  "We are doing this as a precaution" is a term I have heard frequently on this journey.  Emergencies are truly rare.  I am beginning to understand that this entire weekend side trip away from Blythedale was not necessary but a precaution.    And while I totally agree with and understand precautionary measures, they keep us all safe in most instances, I will remember this weekend as a bit annoying if it was all not necessary.

It turns out the bacteria they found in Byron's blood, which had them very worried yesterday, was from bacteria that was on his skin when they took blood in the ER.  He did not have a fever when we arrived in the ER (and still doesn't) , so he was already doing much better in that regard  The doctors here have told us every day the the increase in white blood cell count is due to Bryon being on steroids.  And, I posted a picture of Byron's enlarged glad yesterday on the Hemispheretcomy Facebook Page (yes there is one - there are two actually) and one mother said that after her daughter's surgery, she had an enlarged gland for a year.  So, enlarged gland, bacteria in blood, increased white blood cell count, MAY turn out that to be a big nothingburger.   Which will be awesome and 😖 at the same time. 

Byron is doing SO well, everyone here and at Blythedale has said that.  Last night the doctor told me "Byron looks amazing, so just based on how he is presenting, there is not really too much that can be wrong with him".

If we keep on this positive trajectory, we should be back at Blythedale on Monday and home soon!

Here are a few words from Byron:

No News Yet

Still no definitive news on what is causing the infection.  I keep asking them to tell us how they will know the antibiotics are working as the only other outward symptoms are a swollen lymph node.  They answer that question by saying that if Byron was REALLY sick he would act differently, and certainly not be so perky.    I hope they are right - of course one has to have a level of trust in the doctors or there would be no peace of mind at all.  But I keep asking questions and hopefully we will get an answer.  They are doing another very sterile blood sample this evening because they were able to detect some bacteria in Byron's blood from the last draw, but that was in the ER and everything was a little crazy then.  We should have some more answers tomorrow.



Tonight my brother Jeff is staying in the hospital and I am in a nearby hotel.  It's sooo nice to be in a place with out beeping.  I really need the rest.  I'll go back tomorrow morning.

Byron and Jeff escaped the room earlier this afternoon.  I love it that at Columbia you can get permission to wander the halls and the main lobby.  Byron has been begging for us to put up our Christmas tree and I keep telling him "After Thanksgiving" but today he found one, and it's huge.

Admitted

It's an EXTRA large coffee, bagel with cream cheese kind of morning (diets be-dammed).

When you are ten years old, being in a New York City emergency room, arriving by ambulance no less, and staying up until 1:30 in the morning, life seems pretty ok. 

They admitted us to a regular floor at 1:30 in the morning.  By 2 am he finally fell asleep.  Then of course they make rounds at 6 am and woke us all up!  But we are in the right place.

They have Byron on IV antibiotics and the neurosurgeon who was making rounds this morning said it looked like the lump behind his ear is getting smaller.  Byron has MUCH better energy than last night as well.   Last night he was totally wired.  That could be the steroid wean or the stress of moving here, nobody is really sure. His pupils were extremely dilated as well.

But here he is this morning, sweet and loving, eating his bagel and cream cheese and smiling.  We should know more about what it next later this morning. YAWN 😝

A Little More Info

There is a large lymph node behind each ear, into which the brain fluid drains.  This is what is enlarged behind Byron's right ear.   This is similar to when you have a cold or sore throat and the gland enlarges in the neck.  This gives the doctors a hint that there is some sort of infection in the brain.  This is coupled with the increasing white blood cells, which are clearly fighting some sort of infection.

This is all not terribly uncommon with this kind of surgery but unfortunate.  If the little lymph node doesn't reduce in size by morning there are other tests on the table, a test for Meningitis which involves a tap for spinal fluid, an MRI or a cat scan.

This is an inner city emergency room and yet the energy is fairly calm.  The air quality is not great, it feels a bit low on oxygen, but in general it could be worse.  It's not like a TV Emergency Room at all 😁

We have Siddha Yoga chants playing on loop and this is helping.  Byron is much less agitated now.  He has had a little melatonin for sleep, and the other medicines will be coming shortly.

I believe he will sleep well in this little private cubby.  Me - well we'll see.  I don't have a bed or even a comfortable chair, but there are actually entire families in the hallways so we are grateful.

Just got a cot!  All is well now - zzzz

Back at Columbia

Byron was transported by ambulance to Columbia ER to check out why his white blood cell count is climbing.  We are currently in the emergency room and have been for several hours.

They took blood and then we had to wait for the results to come back.  Byron's neurosurgeon was in surgery so they couldn't ask him to look at the results until he finished. 

Mostly they think he's is doing great which is good.  They are worried about a very enlarged lymph node behind his right ear.  And that his white blood cell count is 26, was 23 this morning, and should be 5.

At the nuerosurgeons request, they have decided to admit us overnight, but the hospital is completely full so we are going to spend the night in the ER.  Byron will be given IV antibiotics and then in the morning they will decide what to do next.  If the lymph is getting smaller than he can go back to Blythedale on an oral antibiotic.  If it is getting larger than more tests may be needed.

I am going to stay here tonight and Bob will take the car back to Loch Sheldrake. Byron is a little wired but in generally good spirits.  He really wants to go home so all this is seen as a major side track to Byron.  But the adventure continues! 

Infection?

Byron’s white blood  cell count is continuing to rise. It looks like we are headed to the ER after all. Will update soon.

Fever Down!

It looks like the 101 temperature that they recorded yesterday was a recording mistake on the part of a nurse.  That's the explanation they gave us this morning for why Byron's temp was recorded as 101.  Sheesh!  Byron's temperature this morning is 98.5, corroborated by his dad in a second taking.  From now on we are going to check and recheck every temperature for accuracy.  But this is great news!! Thank you for all  your prayers and good wishes!

A Little Hiccup

Byron's fever spiked to 101 today so they took more blood in the hopes of identifying what is causing it.  We should know more when the results come back tomorrow.  The fever indicates that there is likely some kind of infection somewhere but they are not sure where.  If another fever spikes, e.g goes over 101 as it did today, we may be back in the ER at Columbia in New York for further tests.  Please keep all your prayers and good wishes coming Byron's way!

Because of the fever Bob and Byron had to hang out in the Cafeteria while they disinfected his room.

Moving Towards Leaving

The tentative date we are now looking at for transitioning out of Blythedale is Wednesday November 22.  Byron is VERY eager to go home.  This date is two days after the final dose of steroids.  The steroids help prevent brain swelling and they stop on the 20th.  Then we will watch closely to make sure once the dose is down, that he is still fine.  But I still have some other concerns.

1) Fevers are still between 99 and 100.  This can be normal for 2-3 weeks although all kids don't get them.

2) Byron has started to have a lot of trouble sleeping.  For the last two nights he has not fallen asleep until 11:30 or so and is getting very cranky again.  He has been taking morning naps.  I really want to make sure he is sleeping before we go home.  The doctor told me this morning that it could be the steroids.

I called his neurologist today to see when we can get an EEG.  I really would like to see that the seizures truly have abated.  It may be too soon for the test but it would be great to get an early idea.  It would make me feel much more comfortable about the sleeplessness to know they were not seizure related.

Other than that Byron continues to heal well.  He's eating everything in sight which is not typical for him and everything else seems really good.  

Byron Made a Video for His YouTube Channel

Byron has a YouTube channel called Byron Gamer Plus.  Today he made a singing video right from his hospital bed.  Take a listen... (and as Byron would say - "Subscribe and smash that LIKE button!")

Blessings Work!

I hear at least once a day from a doctor or a nurse "I have never seen a child recover from this kind of surgery so fast!"  Byron is only ten days from a major surgery, probably one of the largest surgeries a child can have, and he is doing so great.  A doctor today told me that children are usually quite out of it for a week to ten days cognitively.  They don't speak, can't remember things, and the personality is flat.  Today Byron passed all his physical and cognitive tests with flying colors.  Except for his greasy hair from the Neosporin, you might not know that anything had just happened.  And if this really is the cure for his seizures (we will know in a  few months when they repeat the EEG and MRI) then all has been a resounding success.

Anecdotally I can tell the seizures are better/gone.  He has no word retrieval issues, he is not stuttering, he is not vocalizing at random times and his energy seems 90% calmer.  If this is all we get from the surgery - I'll take it and it was worth it.

First Day of School and more

The day started out a little wobbly.  Last night Byron went to bed at 8:00 pm and was up again at 9:40 pm, 11am and 2am.  No real idea why and it did not look like there was any "seizure" type activity associated with the waking.  The doctor thinks it could be the steroids he is on causing the fitful sleeping.  His last steroid dose is on the 20th so that will be nice.

But because he didn't sleep well he was very cranky early in the day.  He napped at 10:30 am for about 45 minutes and that seemed to do the trick.  He has been chipper and happy the rest of the day so far.

Today he had one hour of private school instruction, and then he asked to go off to the school building.  They picked him up at 1:00 pm and he was there for an hour.  He really liked it.  He mentioned that his favorite things were the hamster and that they play a video game he likes called Roblox.

At 2 pm he was whisked off to speech and physical therapy.

Everyone thinks he is doing really well.  They keep asking me(?) when I think we are going home.  Today I said that I thought it could be two weeks from today - November 27th - but they told me that they are really not sure he needs to be here that long.  His physical functioning is almost where it was before the surgery, and we can get  physical therapy as needed at the Center for Discovery in Hurleyville.  But, in my opinion,  Byron needs to be medically stable before I would agree to take him home.  That would mean no more fevers or swelling.

They are going to have a team meeting about Byron's case tomorrow so we will see.  It would be really nice to be home for Thanksgiving I have to say.

Byron's recovery truly is miraculous.  I never imagined it would be this easy (knocking on wood superstitiously).  It is the boundless Grace and Blessings that carry us along. 💖💖

A Sunday Visitor

Byron's Sister-In-Law, Regina came for a visit this evening.  There is so much love between the two of them!

Happy Sunday

Today I showed Byron some cards and letters that came from friends and well wishers.  Thank you to all!  Here is a picture of Byron looking at this one from his school class.

The little bandage on his ear is because the back of his left ear is getting irritated from being slept on so much as he is favoring that side.

The nurse said that Byron's incision looks better than any she has ever seen.  I couldn't believe it when I saw it after not being here for 2 days.  The total path of the incision is a U shape about 12 inches and it all looks so great.  Nearly healed.

He still has a bit of swelling on the right side of his forehead and and behind, but it is 1/2 centimeter reduced from the last time they measured.  He also still has low grade fevers, today it was up to 99.8F.  I'm still worrying that a bit.

But in general, a pretty good day! 

Quiet Saturday

Byron is examined 4 or 5 times per day by nurses and doctors, with just nurses on the weekend.  Here a very sweet nurse is putting Neosporin on his incision while his blood pressure is being checked.  With the addition of twice daily iron, it seems Byron's fevers are coming under control.

Once thing we are all noticing is that the sweetness that was a prominent factor of Byron's early personality, is returning.  For a while, as the seizures ravaged his brain, it was very hard for Byron to control his attitude and his anger.  Now he is so sweet!  As the steroids are weened lower and lower (they caused some early grumpiness) his sweet adorable personality is emerging.  He's still funny and silly, but he is SO sweet.  We are all loving seeing that return.

Progress!

It's amazing that only one week ago Byron underwent major brain surgery where one entire half of his brain was disconnected.  The human body is an extraordinary instrument!  It adapts and changes and supports in extraordinary ways.  And Byron is truly "the miracle man" in this regard.  No one can believe how much he is accomplishing in such a short time.  In the videos below he is riding a bike and walking with a new type of brace.  Both went really well.

A Succesful Day

Byron was much more himself today and boy was he busy.  He was seen by a pediatrician, a neurologist, a physiatrist, had sessions with a speech therapist, occupational therapist and two sessions with a physical therapist.  He had blood drawn as well.  Yikes!! I'm exhausted just writing this and he had to do it all!

Bob came for a few hours which was very nice.  Byron also had a FaceTime call with his Nana.

We got the results back from the blood draw and everything looks good expect his iron.  He is anemic right now and still has a fever so they will add iron to his regimen.  He also is adjusting to the field cut in his eyes, which makes it challenging to see to the left but they told us he is doing well with it.  His neck is stiff and his head tilts a bit.  They think it is a combination of the vision loss and some unexpected neck weakness after the surgery.

Despite it ALL, Byron asked to go to the evening activities tonight so he is playing Wii Bowling with some other kids right now.  He is eating and drinking well, and he even sang a little bit for me this afternoon.

Starting tomorrow, Bob will take the weekend shift and I will get some much needed rest.  I will be back on Sunday afternoon. My brother Jeff will come to Blythedale on Saturday with some local food and good company.

Lovely Cold Morning

Byron is sitting up and feeling better.  He is still at risk for fevers, but his fever is down this morning. I am hoping he can have a little PT and OT today.