Scott & Sunny

Scott & Sunny

Wednesday, November 12, 2008

Just an update on all the things going on with Scott. As Stephanie said, he vision was very messed up when he woke yesterday. At first it was thought to be another blockage/stroke. The mri almost certainly showed it was edema in his brain causing the problem.

He's been on blood pressure medicine since, and it seems to have shown some improvement. Dr. Fernandez, the neurologist who treated Scott last year for his stroke, has been a gem. He's in the room now giving Scott another inspection.

On top of this, there was what appears to be another dystonic reaction to Compazine. Scott literally had his head turning all the way to the right or left and backward, and his eyes would be all the way to that direction as well. It was like a violent muscle spasm, and I couldn't keep his head from moving out of fear of hurting him. It was painful, scary and horrifying to watch topped on knowing something isn't quite right in his brain at this time.

Not much rest last night, as he is constantly checked in icu (a very good thing). We don't know what today holds. Hopefully a regulated bp and a return to the normal oncology floor.

We are indeed very scared for Scott right now. It is a maddening series of tests/reactions/remedies and discussions amongst us, the nurses and what seemed like 8 different doctors of all specialties yesterday. He did have a kidney doc in, Dr Campos (another wonderful doc), whom said his kidneys look nice and strong and are working correctly (a big concern with the hi bp). His opinion is the mass amounts of prednisone Scott has to take has caused the hi bp. The prednisone can't be stopped, as it is a vital element of his leukemia protocol. Dr Campos was shocked at the dosage Scott has to take, and told us it is more than twice what a kidney transplant patient must endure.

Count yourself lucky if this all makes no sense. It is virtually impossible for someone not dealing with it first hand to really understand. I wished we didn't have to understand it. It's like walking a high-wire in a hurricane.

6 comments:

christine said...

all we can say David is that we are all thinking of you constantly and praying scott will come through this without any long term problems.
mum/nana

Sandie said...

The only thing I have to understand, I do. This sucks all the way around. But I'm focusing on the thought that this will pass and that no damage will be left behind.

Steph, make sure you at least try to rest. Ridiculous, I know. But you can't give from an empty cup. So please try. Even if it means leaning on a wall and closing your eyes for one minute.

Thinking about you and sending lots of love.
xoxoxo
S.

Proud Momma of 3 said...

I wish I could be there and just give you all a hug. Scott is so special to me and Sierra loved him so much. I remember she couldn't say Scott but would call him Cott. Stephanie...you are also in my thoughts and I can only imagine the fear but remember Scott is a strong kid. He is a fighter and he will do what comes naturally to him...fight. If you need me call. In the meantime...I am thinking of all of you and checking on you.

Stay strong...and believe things will get better.

Love,

Mary Lynn

Ben32113 said...

Do they think Scott might be having Sz, secondary to the swelling? Sounds like he might be having tonic Sz from your description. Just a thought, you might want to ask the docs if these movements could possible be Sz. Hope things start to improve soon.

Nurse Ben

Ben32113 said...

BP stable today?

Nurse Ben

Dawn said...

Oh my goodness. What can we say. You're right David it is difficult to comprehend everything that is happening with / to Scott. All I know is you're all suffering so much right now. It sucks big time.

Steph, try and grab some sleep while David, or even Derry, sits with Scott. How is Derry holding up?

We're thinking of you and sending love.