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.

All Better Now

We finally got settled in to the section of the room by the windows.  Byron is asleep and all is well.  The view overlooks the front entrance and some dolphin topiary.  Like the last time we were here we have a corner room so it's extra large.  I do hope they honor our need for quiet and healing by letting us stay here by ourselves for a while. We'll see!

With Mantra Bear he calls Kevins

Rough Night

Our first night at Blythedale was not so smooth.  Our roommate had a lot of trouble overnight so there was not much sleep to be had.  I immediately brought this up with the nurse practitioner this morning, and now that the roommate has left, they are going to see if they can block this room off as a private room.  This would be awesome!!

Byron also has a fever this morning and some swelling around the incision so they are not going to push him off to school or therapy today.  As we didn't sleep much last night this could be the cause but of course I have no idea.

I sent pictures of the scar off to Dr. Feldstein, the surgeon, this morning, but he replied that there is no cause for worry. 😥  The oiliness is bacetration they are putting on twice a day to prevent infection.

At Blythedale

It's been a whirlwind day!  At 11:00 am we learned that we would be leaving the hospital for Blythedale at 12:30.  We checked out of our Airbnb and I got on the ambulance with Byron and Bob got on the bus for Loch Sheldrake.  Only one parent at a time can stay at Blythedale so we will start longer shifts as of today.

Byron was so warmly welcomed at Blythedale by Maureen, the physical therapist, who remembered him fondly from his last time here.  Byron was examined, poked and prodded by every conceivable type of therapist, neurologist, nurse, teacher, social worker and on and on.  We are both exhausted but happy. We know we are in a good safe space to spend the next little while.


Byron is in a shared room, but luckily the fellow who has the part of the room with the window is leaving tomorrow so we will move to that side of the room.

The part of the room we will move into tomorrow

Byron will have a bit of school in the morning and then therapy in the afternoons.  He was not cleared to walk the halls on his own so he will move from place to place in a wheel chair for now.

Settling In

Out of ICU

We are out of ICU and on the regular floor.  This is a floor Byron has spent a lot of time on in the last few years so there are many familiar faces.  It looks like we will be at Blythedale Rehab in a day or two, with the MRI happening tomorrow.  Here is a picture Bob took after he sponge washed Byron's head.

Byron Walking with the PT

Byron's walking is really good!  We are very happy about this.

Many Open Questions Today

Today there are many changes/activities that will/may happen.

1) Byron could move from ICU to a regular floor.  He's doing so well however that the surgeon said that our "Miracle Man" (his words) could go straight to Blythedale rehab today.  It is unlikely they can get the paper work ready for such a transfer so it maybe that we will stay here in ICU another night. Everything is up in the air at this point.
2) Byron should have a sedated MRI some time today or even overnight.  It's a 24 hour MRI here I guess.  And the regular slots during the day are always full.  The MRI will show the surgeon if there are any connections left although today he told us that will be very hard to see.  When they disconnect the right hemisphere from the left they want to make sure there are no nerve or blood vessel connections still intact.   These micro connections can still allow some of the seizure activity to move across and bother the "good" hemisphere.
3) Byron will get his hair washed today.  Then they will just put a bit of Neosporin on the scar twice a day.  I'm very happy for the hair wash because then we will look a bit more like himself.
4) Byron still remains very grouchy due to the surgery but also because of the steroids he is getting.  But they are going to wean those today.  It is very funny because he is so grouchy and ornery but he always says please and thank you.  So that's something :)

Sunday - Part Three

Surprise!

Sunday - Part Two

The physical therapist came and got Byron to stand and sit up in a chair.   His face is still swollen on the right side but everyone is saying it is so much less than any other patient they have seen with similar surgery .  The nurse this morning was quite shocked at how good he looked!

Byron has been complaining about how hard it is to chew.  We learned just today (not sure why they didn't tell us this before) that they had to cut the muscle in his right jaw, so chewing may be difficult for three or four weeks.  We will ask the hospital to keep the food as soft as possible.

It looks like they will not move him downstairs until tomorrow.  They want to get an MRI done before they move him.  The MRI will check to see that everything on the right side is disconnected.

Sunday- Part One

This morning they took the bandage off.  Everything looks great.  Everyone is amazed at how little swelling there is and last night he had no fever at all.  Today they will likely move him out of ICU to the regular floor.  This is the floor he has been on many times for EEG and other tests.

Saturday Part Four - Eventide

Byron is much better this evening.  His pain has abated considerably and he is now awake more. He's been awake since about 5 pm consistently.  He ate 1/2 of a milkshake and one chicken nugget  - yay!!

Just now he was remembering a picture he saw this evening of his brother's dog Penny and I saw him genuinely smile for the first time.  This is the picture he was remembering.

One of the things they told us to expect was a big fever.  But as Byron is breaking all the "rules",  he has only had a fever of 99.5 which is perfectly ok.

He is also able to push himself up in bed using both of his legs.  I am confident that when they get him up tomorrow he will walk just fine - fingers crossed!

Saturday Part Three - Pain

We had been warned in articles we had read and accounts from other families that had gone through Hemispherectomy, that at some point there would be pain - and a lot of it.

The pain began around one.  They weaned him off the morphine because they want him to move today.  They gave him his first dose of Oxycontin soon after but it didn't help.  It was painful for me to watch.  He kept begging for them to give him back his "button" which I know gave him great relief every time he pushed it.

BTW - I would not recommend a surgery on a Friday, as the weekend is kind of sluggish in the ICU.  It took them a very long time and much insistence on my part to get the additional pain medicine. Finally, after about 45 minutes, they brought him some more Oxy.

After about 5 minutes this extra dose kicked in and he was able to fall asleep.  During that horrible forty five minutes I was able to make him feel better by getting into bed with him and putting my hand on the skin of his back and sending him healing thoughts.  Up until this point he hasn't wanted me to stand too near the bed or put any hands on him.

He's peacefully sleeping now.  He hasn't really eaten anything yet except a tiny bit of pancake.  Chewing hurts. But he is drinking and he passed gas, which apparently is a very big deal and a good sign. 😝

When Byron woke up we chatted a bit and I put some on video.  I would only make a video with Byron's consent, and Byron is usually pretty eager to make videos.   The lights are quite low but as you can see in the video, he is really speaking and moving well.

Saturday Part Two

Since I arrived this morning Byron has mostly been sleeping.  He wakes up for a minute or so and then goes back to sleep.  I am sure that sleep is very good for healing but I am also guessing that this is the first time in a very long time that Byron's sleep has not been interrupted by the spiking and seizures that plagued him for so long.  He seems so at peace.

Saturday Part One

Byron seems very good today. He's tired but alert. He's very grouchy but always says please and thank you :)

He is drinking on his own.  He chewed a tiny bit of chocolate chip pancake.  He said that chewing hurts which is to be expected.

They are weaning him off of morphine.  Since last night he had a little button that only he was allowed to use.  He could push it whenever he felt pain and then it had a lock out for ten minutes.   The parents are not allowed to push it by law which I think is pretty cool.  They are transitioning him to just tylenol in a few hours.

His eyes are sensitive to light so we have the blinds drawn and the lights off.  But he says his vision is ok.  I noticed he is tilting his head to the left to watch the iPad screen and I'll pay more attention to his eyes as he is feeling better.  But he very strongly said that his vision is not bothering him as of yet.  This is more great news!

All of the blessings and prayers from around the world are still gracing us every second.  Your love is very palpable.  Thank you again SO much!

Bob just sent a video

I love that Byron seems more alert!!

Surgeon Follow Up

The surgeon came by to see Byron in the ICU (Intensive Care Unit) about two hours after the surgery.  I told him that Byron was speaking in full sentences and could move his left leg and arm, and smile.  He said , "Certainly not on cue, just involuntarily right?'  I said, "No, we asked him to move them and he could."  The surgeon was very surprised by this.  He said "Well don't be surprised if he loses that agin in a day or two, but if it comes on this early there is a very high likelihood that it will come back."  He also let us know that Byron is on a very high dose of steroids to reduce swelling.  He told us that he will be VERY cranky in the coming few days.  Byron has been a bit cranky but hey - he's just had brain surgery.  I would likely be cranky too!

The epilepsy doctor also came in and she was very pleased at how alert and present Byron was.

Bob is staying there tonight and I'll go back up in the morning.  It's been a long but very WONDERFUL day!

Byron is Doing so Awesome!!

I have read so many accounts of children who have had this surgery who are not able to talk or move for a really long time.  Byron is talking and moving both his left arm and leg which is amazing!!  He is also already being generally himself personality wise.  He just asked for a pillow.  He is speaking in full sentences e.g. asking us to pull his socks up. He has asked what time it is.   I can not stress enough how extraordinary this is.  I'll post more as he is less groggy.  I also made a video which is below.

He’s awake and talking!!!!

That’s very unusual. We haven’t seen him yet.

It’s Over!

Heading up to ICU.  Should be able to see him soon.  :)))

Major part of surgery is done!

They are just closing now and we should be able to see him in about an hour. Everything went smoothly and easefully.  Depending on how long he takes to come out of anesthesia they will remove the breathing tube before we see him. I would prefer that!!

No real updates yet

The patient advocate called in to the surgery to see how things are going.  The surgeon said things are going fine but has no idea how long it will be.  So we wait.

We are Feeling All the Blessings!!

Thank you so much for ALL the

Byron was great going in

At about 7:30 am, Bob went in to the surgery theater with Byron.  They put Byron on a warm air bed as the room was very cold.  He was relaxed and asking everyone whether they were going to put him to sleep now.  He had a case of the hiccups at this point.  As soon as the anesthesia mask went on his face, the hiccups increased.  He said "It's not working!" A second later he was asleep.  We should get an update from the surgery by phone soon.

Byron Has Gone In

5:30 am Subway

Bob suited up to go in for the anesthesia

Byron and the Surgeon Dr. Feldstein

ZZZ

Everyone (except me) is asleep.  5:00 am wake up on the phone alarms.  We will take the 1 train subway from 137th and Broadway (Byron loves the subway) to the 168th street stop at 5:45/6:00 am.

We are resting peacefully tonight knowing that we are held aloft by the blessings of so many.  We feel all the love and blessings deeply, and what could have been a very stressful evening, is turning into a calm and hopeful night.   Blessed night to all!

Surgery scheduled for 7:30am

We just heard that the surgery is scheduled for 7:30 am with an arrival time of 6:15.  Regular medicines and food until midnight and nothing after that.

Dinner Happiness - at OSO on Amsterdam and 141st

Settling In

We just arrived in NYC to our lovely Airbnb in Harlem.  We will stay here through next week. We were greeted with pastries and drinks and a parking space across the street. Magic!  We will learn around 4 o’clock when the arrival time is for the surgery, but a quick call to the surgeon’s  office preliminarliy indicated that we arrive at 6:00 am for surgery at 7:00.

Bob is sleepy

Byron likes it here!

Insurance Approved!

After a few hiccups with Byron's Insurance - Fidelis Managed Care Medicaid - we are approved!  This means the surgery, the hospital, the surgeons and rehab are all going to be paid at 100%.   We did learn from the surgeon's office that if the out of network doctor (who is one of the surgeons) was not approved, the doctor would perform the surgery for free.  :)

We leave on Thursday afternoon and have rented an Airbnb on 140th street and Amsterdam until next Wednesday.  After that we have some flexibility to rent for longer if need be.

Onwards!

We REALLY have a date!

Apparently all went well when Byron was presented to the surgical team yesterday.  Byron has a a surgical date of November 3 at 7:30 am.

Here he is - his usual wacky and wild self!

We Have a Date?

The surgeons office called with a tentative surgery date - Friday November 3, 2017.  But nothing is real until Byron's case is presented tomorrow at 9:30 am.  We will all stay tuned!

More info on today's meeting

During the meeting today, the surgeon gave us more details on the surgery, recovery, time in the hospital, etc.

Byron can expect to be in surgery for 6-8 hours.  The surgery is done with a microscope.  Byron will have a four inch hole that will be closed up with very tiny screws that the doctor showed to us.  With these screws, Byron will still be able to go through an MRI, C scan, metal detectors etc.  The bone will heal completely in three months.

Byron will be in ICU for  1-3 days and then in the hospital for another 3-10.  Because we are looking to go to Blythedale in Westchester for rehab, he may be transferred there early as they can do most of the wound care etc.

The most common immediate side effect is a kind of placid demeanor with not much personality.  This is due to the brain trying to reorient itself.  And the doctor said that Byron could just wake up completely the same as he went in.  This would be due to the fact that there is currently not much going on in the right side.  The MEG test results showed there was no activity there at all when Byron read or moved his eyes or spoke, other than seizure activity, so that is a very good sign.  And all the seizure activity is still originating from the right so that is very good.

The surgeon promised they would call us today with a date but that didn't happen.  I will call them tomorrow to see what can be done about getting a date.  The surgeon said that we can start with a date even before he is presented because even if they choose the VNS instead of the surgery, it would be the same team.  What we didn't make completely clear is that if the team is only willing to do the VNS, we will go to NYU for another opinion.  As the team is not the ones seeing the regression as we do, we can't possibly wait the 8-10 months that the VNS will take to work.  And as the surgeon said, we may end up here again in a year with a VNS failure.   The thing that makes me nervous is he strongly recommended the surgery last year when Byron was presented but the neurologists convinced everyone that we needed to try more drugs first.  So they do have some sway.  Ah well - another two more days of waiting!

Below are some pictures he showed us of Byron's MRI. The white space that can be seen in the right hemisphere is fluid.  According to the MRI , the left hemisphere is completely normal and seems to be doing all the good work.