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 :)