Surgery over and all ok - post by Fay

Surgeon said there is no active bleeding. It was a clot that developed from a leak after Monday's surgery. They cleaned it out and left a tube in case it happens again.
Moving to ICU soon.
As of now, back on track for original plan.

The latest news - post by Fay

The final CT scan was reviewed by Josh's team of doctors and based on what they see, combined with his symptoms (worsening right side weakness, unusually sleepy, difficulty responding and confusion) they have determined he needs surgery to drain blood/fluid that has formed between his skull and electrodes. They believe his symptoms are due to pressure on his brain.
So he is currently in surgery.
The decision was abrupt and was the consensus of the doctors.
Surgery is expected to last 1.5 hours and started just before 5pm.

No Turning Back Now - post by Fay

I don't want to talk, think, write, or remember the last 24 hours. It's been bad. A real life living nightmare. The worst.
However, before surgery, I told Josh (and you) that I'd do updates.
He was doing ok after surgery and once he got past the vomiting he had an "uneventful" night. But, around noon on Tuesday, he started experiencing severe pain. It came on quickly and was unmanageable. I found out that he hadn't had any pain medication since 2pm on Monday. This is NOT usual. They started meds and he got through it but not before shaking and suffering so bad that he said that he didn't want to go through with it, he wanted the wires removed, and he wanted to quit. But the worst was when he kept saying, "I can't bear it".
We were told that after a surgery like this, pain is severe so pain medication is always needed. Somehow, something went wrong. 
A nurse told me that sometimes the anesthesia lasts for hours after surgery and must have held him over but when it wore off, he wasn't pain medicated.
Once they got his pain under control, around 4:00, he was moved to the Epilepsy Ward.
He's in a private room (which has camera, monitor, doors open at all times) and the wires coming out of his head are connected to record his seizures. He has a button that he (or me) is supposed to push if he feels a seizure. His arms are restrained, he's wearing a chest restraint, his bed is padded, and the floor below is padded.
The nurse comes in every hour (even if he's asleep) to do a neuro check and check his vitals. During neuro checks, they ask him his name, date, where he is and they check strength in arms and legs. They ask him to smile and shine a flashlight in his eyes. Unfortunately, after surgery, he's been experiencing right side weakness. Mostly his hand and arm. Sometimes things like this can happen and they can get better with time. Though I'm sure it's very scary for him. He tries so hard to raise his arm and squeeze his hand.
So the whole point of the first surgery was to lay the mapping grid in order to find out where the seizures are happening. If the focus is in an area that is safe to remove, they will remove those areas during the surgery to resect the tumor.
Unfortunately, in order to see this, Josh has to have seizures. Seizures are the worst part of his life. He is absolutely terrified of them.
Last night they stopped giving him one of his seizure meds in order to bring on the seizures. Around 3am they started. They lasted so long (nearly an hour) that they gave him a heavy dose of Ativan (which is what he takes at home when he feels one coming on - like a rescue med) and he hasn't had another one. But, the Ativan made him so sleepy, it's been nearly impossible to wake him. Which is really scary. He is saying things that don't make any sense.
Since the seizures and medication, he hasn't been able to lift his right arm or move his hand.
They decided to take another CT to make sure everything is OK
I'm waiting for the results. I'm waiting for him to wake up and talk some sense and I'm waiting for this to be over.


PS nurse says preliminary results show no new issue on
CT scan. 

Rough Day

Josh had a really bad day but, is starting to feel better. I was totally helpless today. Watching him suffer was heartbreaking and terrifying. His pain is under control now.
I'm too exhausted to say more.
I miss my kids.

First Surgery Went Well - post by Fay

Just a Quick Update ~
The doctors said surgery went well. It lasted a bit longer than expected, due to scar tissue from his previous surgeries, but it did not cause any complications.
He's in the ICU for the next 24 hours, as planned.
Unfortunately, he's experiencing a lot of pain and nausea. He's still quite groggy but is responsive when asked questions.
He has an awesome nurse so that makes me feel a bit better.