Showing posts from February, 2015


Life returns to semi-normal.  Right now I won't let him out of my sight. Medicine at the ready I am watchful. I'm sure that will ebb with time. He's awfully cute!


The only people in the world who bring hospital food home. But we saw the chicken nuggets come in as we were leaving and couldn't resist.  More later but for now rest.


We are being discharged now.  What we heard from the neurologist was not great news but not unexpected.  From the EEG  there were some spikes on the right side so now there is a 50% chance that Byron  will have more seizures. But there is also a 50% chance he will not!  
We will not be medicating him right now which is great news.  We will have medicine in case he has another seizure longer than three minutes. 
This neurologist is wonderful. He said he was late this morning because he really wanted to go to church. I told him I thought that was a good thing and not to worry. 
Bob is sick now so we go home with a bit more than we came with but all in all not a bad outcome.

Last Day - Fingers Crossed!

Byron is in better spirits today, a good night sleep and your own clothes can make a BIG difference.  
Byron's flu is very contagious so they have him in isolation.  Everyone who comes in wears a mask so we have only seen eyes on all of the staff.  But you can still see their warm smiles through their eyes and feel their care.
I am really hoping neither Bob nor I get the flu but its very hard not to exchange those pesky germs with this cute little guy,  Bob is starting to feel a bit wonky.
They just took Byron's lunch and dinner order which I'm hoping is not a bad sign.  Last night they only took breakfast.   We would love to go home but will accept what comes.
We have spent a bit of time in hospitals in the last few years and I have so much empathy for the long haulers.  I see them here in their really comfortable clothes and their grim smiles.  I have NO idea how they manage.  I know that the Ronald McDonald houses are life savers for these families. They have one right…


Byron had his EEG around 1 pm today.  He did a great job.

He made the technician laugh with his antics.  But now his hair has this Fab look from the glue.

Anyway - Byron is really tired, I can see it in his eyes.  It's not that easy to sleep here and as we moved our room at 1 am last night which was the second time they woke him from a sounds sleep (the first was for an 11 pm full Nuero eval with med students) I am hoping he will sleep well and long tonight.

EEG results tomorrow we are told and hopefully HOME!

Brief Update - Neuro

We met with the Neurologist at long last.  What a wonderful man.  He was kind and thorough.

He told us that in the last year they have discovered that there is only a 15% chance that kids with stroke will have seizures.  It's only 50% if they had seizures at birth, which Byron did not.

So given that the overall risk is small, the seizure could have been caused by the fever and flu.  He said that there is not a compelling need to put Byron on seizure medicines just now.   If he has another seizure without fever then we would begin a seizure medicine protocol. And if he were to have it it would be in the next year or two.

So now we wait and see and add another doctor to Byron's team.

Byron now needs an EEG here as a precaution and if his fever stays down we can leave tomorrow.

Waiting Waiting Waiting

We are in the area of Neurology called the "Theatre Neighborhood" .   This is Byron's room tag.

The pediatric floors are divided into neighborhoods.  I'm glad we got this one given my prediclictions!
All we are doing now is waiting for the neurologist to set us on our next round of tests, updates, results, consults etc.  Absolutely nothing has happened this morning except monitoring.  Byron's appetite is good, he is on Tamilflu, his fever is down and GOD BLESS the iPad!
I have been told the Neurologist is on the floor so fingers crossed!


50-60% percent of children with Hemiplegia develop seizures.  The seizures usually occur in the side of the Brain that had the stroke.

We always knew Byron was at risk for seizures.  When he was about 8 months old he was tested.  He participated in a three day video EEG in Syracuse . He was hooked up to monitors and had to stay in a crib for three days.  If I thought he was having a seizure I was asked to  push a big red button marked "Seizure " (aka panic) and they would mark that time on the video and the EEG.  In the three days we were there I pushed it once but it turned out it wasn't a seizure.  Just some excessive baby eye blinking.

Fast forward to today.  Byron will be eight years old on March 28.  Today at 1:00 his school called to tell me that Byron had a fever and a stomach ache and that I should come get him as soon as possible. I brought him home and he immediately fell asleep on the couch. 
After a while he woke up and started staring.  I thought he was jus…