Byron Home!

Byron is home and doing ok. Fever of 101 but we won’t worry about that just now. Celebrating having everyone under one roof. 

Going home today!

 As far as all the morning nurses can tell, we are going home sometime this afternoon. We need to wait until the morning rounds. His swelling looks good and fever is only 99.  Not too bad. 

Still Hoping for Departure Tomorrow

A member of the neurosurgery team came by and said that they were not all that worried about the swelling next to the right cheek, but more abut the swelling on the top of the head.  They said they would check it overnight tonight and again in the morning.  Furthermore, they said that we are still working towards leaving tomorrow.  Byron was elated by this news!

This photo shows the swelling on the cheek area.

But for comparison, this is how much swelling there was after the first surgery - same time frame of two days after surgery.: 

Ok maybe not going home.

 Byron’s fever has gone up again to over 100 and some new swelling has appeared on his temple.  The doctors are convening now to see what’s next. 

Going home tomorrow Sunday

10 am  Yay!👏🏻👏🏻👏🏻

Fevers gone. Resting

Byron continues to improve so going home sounds like it will be today or for sure tomorrow. I was struck by how comforting this little bear has been for Byron. He was here for the first surgery as well as many medical procedures. His name is Kevin. ❤️

Possibly going home today? Sat AM 8:04 am

The doctor surprised us by saying at 6:00am this morning that they are working on releasing us this afternoon. What???!!   I confess that makes me a bit nervous. We’ll know in a couple of hours. If not today then for sure tomorrow. 

Byron seems good this morning. Still sleeping mostly. Even after waking up this morning he went back to sleep. But he can do that at home of course. We’ll see…

Dinner

Byron ate pretty well later in the day. A McDonalds hamburger, some fries, some Mac and cheese and a yogurt cup. No vomiting Yay!!  He also wanted to watch videos which is a good sign. 

Lunch

Byron finally ate some good solid food. A bit of chicken and rice and a yogurt drink. They really put him through his paces today. Not only did he walk in the hallway but he went up and down a flight of stairs! 

Fever of 101 but that does not seem to be a concern at this point. 

Walking like a champ!

 

Day Three AM

Byron tried to have a blueberry muffin this morning but it didn't stay down. The goal for today is to get as many calories in him as we can.  He hasn't really eaten in two days and he is already so skinny!  We bought a couple of high calorie drinks like Naked Juice and Yogurt Drinks from the hospital store so we will keep trying.

Other than that he is alert and talking but mostly resting with his eyes closed.  He tried to look at his phone but it was too much.

His blood pressure is still too high but other vitals are good. 

Step Down 9:00pm Thursday July 28, 2022

 Byron has been moved to the step down unit.  This is a "step down" from ICU and boy is it nice!  It's completely quiet with private rooms, private bathrooms, elegant conference space - like a nice hotel!  Byron's physical reaction to this surgery is a bit different than the first.  The first was very linear: pain was there but got better over time and each day he made more progress.  This time, he makes big strides and then takes a few steps backwards.  He is in a lot of pain right now, doesn't want to eat and is requesting WAY more morphine than the first time.  But hopefully he will have a great nights sleep and be back at it tomorrow.  Good night!

Sitting up!

 

All the cords and wires. 

A Good Morning 8:00 am Thursday

Byron is more alert and clear this morning with his speech. The nurses were in every hour all night (and had to wake him each time) so he’s pretty tired. Yet he even cracked a smile. He’s sleeping now. All in all a good beginning for the day after. 

What a Day!

This surgery was WAY longer and more complicated than the hemispherectomy itself.  And we can see that in Byron's recovery.  He is vomiting profusely and there is much more blood. (sorry - yecch alert)  None of these things were present in the first surgery.  But it is so very comforting to be at a world class hospital.  Every nurse, doctor, nurse practitioner, anesthesiology we meet are at the top of their game.  And super nice!

We will be in the ICU this evening and next and then two more nights in the "Step Down" unit. I am looking forward to greeting Byron when is awake and lucid.  Right now he is asleep, but the doctors who examined him said that he is exactly where he should be and all looks really good.

I won't post any pictures until Byron says ok.  He's not camera ready right now :)

Waiting for a room-technical details

We haven’t seen him yet as they are preparing to move him to the intensive care unit. The surgeon told us that they never found any missed connections so how the seizures were crossing over the corpus collosum remains a mystery. They ended up taking out the frontal lobe and most of the parietal lobe from the disconnected side.  When connected directly to an EEG, these parts were seizing mildly. There was some  significant blood loss which took some time to control, but no transfusion was necessary.  Head was not shaved. 

Pic for reference 

P.s I put these technical details here mostly for future reference when future doctors ask probing questions and I will have totally forgotten the details . 😅

All done!

 All is well. More later….

4:24 still working.

3:10 pm mini update

 Message from surgeon was “still working on the resection. Byron is fine”. 

2:07 pm no news :(

The surgeon did say he wants to take his time so he can get really clear why this happened. He said that if Byron’s situation  can help another child, then it’s worth finding out how the seizures were getting across.  That’s the benefit of being in a teaching hospital. 

No news yet.

This is taking much longer than the first surgery. I know when we see the surgeon it will all be explained. 

He’s gone in.

 Walking in to surgery by himself 

Checked In

 Getting the IV and meeting with Anesthesia

Surgery on for Wednesday!

Great news!  We heard from Dr. Feldstein that the surgery is on for Wednesday.  They are not going to do the SEEG.  They are going directly in and will monitor the brain once inside.  The plan is to remove the right frontal lobe (already disconnected so this will have no impact on Byron's movement etc.).  This is the part of the brain that they have determined is still seizing and is somehow reaching the left side.  

Bryon and Bob will arrive early Wednesday morning for surgery at 8:00 am.  The surgery should be complete by noonish on Wednesday.  Then a hospital stay for 3-4 days and then home.  

Bob and I just reviewed the videos of the first surgery from the hemispherectomy from November 2017.  The surgery will require the same incision and craniotomy so the pain and swelling will likely be the same as the first surgery.  This will mean a bit of careful wound and pain management.  The last time he went directly to long term rehab at Blythesdale so the nurses there took care of all of that.  It will be interesting to see how this unfolds with all that happening at home. I truly hope this is the LAST time this poor child has to go through this. 

No news :(

The surgeon had emergency surgery today so the conference to present Byron’s case was postponed until Monday. Still holding out for Wednesday as a possible surgery date but seems unlikely.  Trying to keep Byron healthy and away from any Covid exposure so a quiet weekend for us 😷

News on Friday

All of our meetings with Byron's doctors were pushed up to early this week (this morning via Telehealth and yesterday in NYC) so his case could be presented in an epilepsy conference this Friday.  In this conference the doctors will come up with the best course of action.  Byrons' surgeon will call us with the results of the conference Friday afternoon.  They are still keeping next Wednesday, July 27 as a possible surgery date, whatever type of surgery that may be.  

Byron LOVED his week with Ryan and Regina and niece Charlotte.  He especially loved The Weekend concert in East Rutherford. Byron went with a young man he met in Coding Camp. 

Byron helping Charlotte down the stairs.

Surgeon’s Office Called

Today Dr. Feldstein’s office called and we have a telahealth appointment next week on the 21st at 3:45 pm.  When I asked what this call was about the secretary didn’t know. She put me on hold and found out from the nurse that it was to discuss surgery. So there is movement!

Byron reports that coding camp is going well. It is being taught by very bright 18 and 19 year olds. Byron was put in the advanced group. All that prep Byron did with his Dad learning Python together has paid off. Byron seems very proud of himself. 

We had a lovely weekend with my brother and his girlfriend Alessia.  

Holding Pattern

As the summer unfolds it is a time of waiting.  No-one has gotten back to us about next steps so we just have to be patient.  (I have tried calling of course)  Byron is tolerating the medications remarkably well and seems to be just fine.  He starts a Python Coding Camp in Montclair New Jersey next week.  He will be staying with his brother Ryan and Regina and our granddaughter Charlotte in their lovely new home in Upper Montclair. 

Byron's next big summer event was to be a two week overnight camp called Frost Valley.  I called today and let them know that he might not be attending.  We are hoping that there will be movement by then and this can all be behind us.  

For the Fourth of July we had a lovely visit with  Uncle Steve and Aunt Ellen, Byron's grandmother Charlotte and extended family including Bryon's little cousins.  Byron had tons of fun swimming in Lake Norman.