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