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).
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!
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'm happy and amazed to report that Josh is back to himself (as much as possible after 2 surgeries and all that he's been through).
He is awake, eyes open, alert, speaking, eating, and even smiling.
Draining the accumulated blood has relieved the pressure on his brain and has eliminated most of his symptoms. Though his right hand is still weak, he can now lift his right arm.
He is properly medicated to be sure his pain in under control.
He doesn't remember anything after 3am on Tuesday, when his seizures started. Which is lucky in some ways because it was so horrible. I tried explaining to him that there had been a complication due to surgery and that he was being taken for emergency surgery because I didn't want him to be scared. However, he remembers nothing. In fact, today he said he didn't even know what happened until I told him today! This morning he overheard the doctors discussing it but he didn't know what had happened! He didn't know he went in for emergency surgery.
We've been through two brain surgeries before and I knew something was wrong. He was almost completely unresponsive and when he did mumble, it was nonsense. SCARY!
The only thing that he said that made sense was when the nurse asked him (during his hourly neuro exam) if he knew why he was in the hospital. His response was
"Crani-fucking-otomy".
In the past, by day 2, I could see some resemblance of Josh, but not this time. Josh was nowhere.
Today, every single doctor, nurse, and technician that cared for him yesterday says what a dramatic change he's had from yesterday. I can't believe he's OK. He was so bad off yesterday that I was worried there would be permanent damage
He may stay in ICU overnight but eventually, we are headed back up to the Epilepsy Ward and moving forward with the original plan.
It's going to get harder before things are better but, I'm looking forward to a happy ending...and soon!
