Saturday, June 25, 2022

Back in His Happy Place

Byron is so happy to be home. He had a very restful and long night sleep.  He’s had great snuggles with Max. His friend is coming over this afternoon for a relaxing visit with barbecue from the local smoke house. 

He also saw an Osteopath this morning who lives here locally. She is truly gifted and I believe she helps him tremendously.   

And it’s a gorgeous, sunny, mild day  A nice pause between now and all that comes next. 





Friday, June 24, 2022

GOOD NEWS! Going Home Today Part Two

We have a way forward!  Just had an excellent meeting with Dr. Feldstein (I LOVE FaceTime) the wonderful neurosurgeon who did Byron's initial surgery.  There is so much hope now!  He doesn't know yet why or from where the seizures are happening but he is determined to make them stop. And soon!  There are several pathways forward:

1) The DTI specific MRI that we had yesterday might show a missed connection.  This missed connection can be fixed by a laser ablation procedure.  Not even an overnight in the hospital!

2) The DTI doesn't show anything so they proceed to an SEEG.  This is tiny implants through holes in the cranium, minimally invasive, and these readings will tell the surgeon exactly where the seizures are coming from.  Once they know (usually takes 1 - 4 days in the hospital) on the same hospital stay, they can go in and remove this seizing tissue.  Should be minor pain and not a long hospital stay.

The best news is that the surgeon said "I'm not going anywhere this summer so I want to get this done!"

Hallelujah! All the prayers and blessings from all over the world and from so many dear friends and family have supported us while we get the answers that we needed.  Grace abounds.

Going Home Today

We do not have complete seizure control and a definitive plan to move forward but there is not much more we can do here. So we follow up in two weeks with his neurologist, hope the neurosurgery team has ideas, and we wait. But Byron seems alert and not too overly compromised by the very strong medications so that’s great. We thought he might be pretty out if it. But other than being a bit sleepy he’s alert and steady on his feet.  

He’s very very happy to be getting home to his video games, his dog Max and the rest of his summer. So are we.  But we leave with a nervous undercurrent. I want those five years seizure free to continue for the rest of his life. I want another permanent solution. May it come and come quickly. A lifetime of seizure meds is not our best option. Onwards! 

Mornin’

 

Byron doesn’t want us to catch any seizure activity because he thinks that will make him stay longer. So we are watching him like a daddy and mommy hawk. Luckily he has a nice smile 😃 

Thursday, June 23, 2022

Still In The Hospital

It was a long day without a lot of movement. Byron is being rehooked up to the EEG leads again with the understanding that we still have not achieved any kind of real seizure control. We will speak again to the Nuerology Dept in the morning to see how everything looked overnight. 

Meanwhile Byron now has to go through a procedure he really dislikes, which is having tiny electrodes reglued to his head after they were just removed this morning.  

We did learn that the MRI this morning, the second this week, was a very detailed look at where in the brain the missed connections might be, if any. Maybe we’ll hear more about that tomorrow too. The overall good news continues to be that all seizure activity is originating from the disconnected side. 

Byron’ spirits, despite all, remain better than ours would be. ❤️


Visitors!

 Denise's brother Jeff and Bessy the therapy pup. 💕 No other news yet.





New Day New Room

Today Byron was disconnected from the EEG leads to see an opthomologist in another building.  In order to get there he had to travel in underground corridors more scary than any movie he said he's seen!  He’s had three seizure episodes this morning already so we really hope they rehook him up to the leads. In a few minutes he goes up for another MRI. In the meantime they have a new room. With a window. Much nicer!  



Wednesday, June 22, 2022

All is Quiet?

Even with all the new medications the seizures are not under control. But the hospital is very quiet tonight so even though the EEG machine is making crazy lines showing that his brain is having a non stop electrical party, Byron remains asleep and at rest. You can really see a lot on FaceTime.  Kudos to whoever invented this! 

The brain/ body is strange and wonderful.  Hopefully we will  have more news tomorrow. We were told today that we may be here a few more days. I agree. I don’t want them to release him until we have a real plan. 

Medication One Not Really Working

The first medication they put him on was Keppra and at least this seemed to stop or slow the clinical manifestation of the seizure, meaning the eyes locked to the left.  So that eye movement is not happening now which is good.  But the subclinical, the electrical discharges in the brain, have not abated.  This is very worrying.  The doctor called them "cyclical seizures", originating from the frontal lobe on the disconnected side. 

So they are going to add another medication Vimpat.  He will be on Kepra 1000mg twice per day and Vimpat 100 mg.  The surgical team is going to meet and consult, but not until tomorrow.  We will have some idea of what the surgeons say about next steps then.  

Bob is tired but he's resigned to the fact that they will spend at least one more night in the hospital.  The medicines are affecting Byron now, he's very sleepy and kind of out of it.  This is why I REALLY dislike seizure medicines. There is no way around the side effects.  More soon...

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…

 

Saturday, May 7, 2022

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!



Friday, August 20, 2021

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.



Monday, July 20, 2020

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.

Back in His Happy Place

Byron is so happy to be home. He had a very restful and long night sleep.  He’s had great snuggles with Max. His friend is coming over this ...