Friday's Functional Mapping, Not So Fun - post by Fay

The Functional Mapping was totally exhausting. It lasted for several hours and Josh couldn't even keep his eyes open. He was so frustrated but he hung in there. I wanted to tell them it was enough when I saw his discomfort but they were determined to get the data so Monday's surgery can be as accurate and safe as possible.
From what I could figure, they sent shock waves to the electrodes on his brain. They asked Josh to read out loud, repeat sentences, perform instructed movements and tell them if and where he felt a shock.
I'm sure Josh will be better able to describe it another time.
During the testing he had so much brain activity, they had to give him Ativan twice during testing to try and quiet or calm the brain activity. This made Josh very sleepy and testing really difficult for him.
As soon as it was over and the doctors left the room, Josh started talking nonsense to me again. He was completely out of it. Plus he lost all improvement in his right arm. It was totally limp again. When I called the nurse, she immediately got the doctors and he was sent for a CT Scan within minutes.
Fortunately, the preliminary results do not show any blood or brain shift.
So they said his behavior was most likely due to the Ativan and seizures during testing.
Josh slept the entire night and woke up much more himself .  Arm, speech and confusion have all improved but not as good as before testing. So, another scary set back and another scary night.
They have decreased his seizure med again because without a big seizure, they won't get the data they want. The small seizures they recoreded are not enough.
All night I waited, in fear, for that big seizure.
If it doesn't happen soon, plans will have to change. The grid cannot safely be left in for much longer.
This morning we're waiting for the doctors for an update.

PS 
When they changed his bandages, I noticed that he has an unexpected incision.
So, new scar - another unexpected development. I'm assuming that during emergency surgery, they made a new incison in order to release the blood and insert the draining tube 
(which we found out had a leak and has since been removed).

Special Delivery for Josh Mick - post by Fay

Josh and I want to thank everyone for their kind words and for all the love and support.
So many of you have sent well wishes and positivity our way.
Thanks for the cookies, treats, plants, flowers, and generous offers to help.
It means so much and makes us smile (and cry).

Room Without A View - post by Fay

This is our new room. 
You can see my cot crammed in the corner. 
Not the best view.
At least it's a private room!

It's Friday - post by Fay

Back up to the Epilepsy Ward yesterday.
They had to add back his seizure med before the emergency surgery, so they had to start over with decreasing it.
We're anxiously waiting for seizures so that data can be gathered to help determine where the seizure activity is and to help guide the surgeon during tumor resection.
Today, they are planning to do functional mapping. Which is where they will have him do certain tasks (talk, write, etc) and look to see which areas of the brain are being affected. Dr. Chang emphasized the importance of the data in guiding him so he doesn't get to near vital functional brain parts during surgery.

Josh felt an aura around 3:30am but besides that, he has not noticed any seizure activity since Tuesday.

One of the nurses noticed that the drain they put in during the surgery to remove the blood, is leaking. So we are waiting for this problem to get resolved.

Josh is becoming irritable and extremely frustrated with the lack of control he has of his right hand.
He has been bedridden since Monday and he's feeling very uncomfortable. He has asked about getting out of bed but, I doubt that will happen. He's also longing for a shower.

We're waiting for the doctors to come by and give us information and tell us the plan.

I just have brain surgery

'3 times' and one more on the way