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Tuesday, August 27, 2013

Room With a View

There has been no change in Ben. He is neither progressing nor regressing. I fear the doctors are slowly giving up hope. They come in, desperately attempt to get him to follow even the simplest commands, always to no avail.

They attempted a repeat MRI last night. He moved around too much and they couldn't get any pictures. They are discussing today if it would be safe to sedate him to try again.

They have been giving him lactolose to try to clear toxins from his blood stream to see if that would help, so far it hasn't. All it has done is turn his stool to water. They decided to hold it for now.

They started him on zinc yesterday, it has shown hope in patients with hepatic encephalopathy, no change yet. The liver specialists still aren't convinced it is HE.

Ben is in a room where we can see a large ornate tower. I don't know what it is or what it symbolizes, if anything. I know that if I could ask Ben he could, and would, give me an hour long lesson on the subject.  

When I was in nursing school I had a term paper due. In the past I had gotten away with hand writing my papers. I couldn't type, and had no typewriter, yes I said typewriter, nor a computer. This particular teacher was requiring the paper be typed. My brother offered to let me use his computer. 

"It's easy to use," he told me,  and then gave me a typical hour long tutorial. Of course I tuned out after the first two sentences. Ben wasn't good at dumbing down instructions. He either didn't get that others didn't understand his technical jargon or he just liked being superior. I suspect a little bit of both. 

After his instructions session was over he went into his room and I stared blankly at the screen. I was terrified. I just knew I was going to do something to wipe out the whole drive thingy he was going on and on about. 

There was no choice, I had to touch the keyboard. It looked harmless enough. I didn't see teeth or any indication that the mouse doohicky was really a rattle snake in disguise. I started to "type." I use the term type very loosely. I was typing in the sense that I was touching the keys, and letters were showing up on the screen. To say I was typING though was a LIE! It took me forever! 

Nine hours later, that is not exaggerated in any way, I had typed nine pages. I was so close to done. For some reason, and I can't remember why, the kids were with me that day. Willie must have been working. They must have been being very good, too. Honestly, I only remember Josh being there. There is a reason for that. 

I was almost done. I was on the last page. I'd been sitting there for, really truly, nine hours working on it. My dad and Ben must have been entertaining the kids that whole time. Valerie was maybe seven, Josh was three, and Alyssa was one or so. They had been so good. 

Josh came over to give me a hug, and this I remember perfectly. I picked him up, gave him a big old squishy hug, put him back down and he decided he wanted a turn at the keyboard. 

Before  his feet were even on the ground he was banging on the keyboard. 

My heart stopped. I shooed Josh off to Grandpa. I slowly turned to look at the screen. I started to cry. Tears roared down my face. There were all of these weird symbols and colons and semicolons and dollar signs all throughout my paper. They were everywhere. On all nine pages. I was devastated. 

Ben came out of his room. My first thought was, he's going to kill me, I broke his computer! He asked me what was wrong. I couldn't speak. I just looked at the screen. He came over, looked over my shoulder. "Joshua banged on the keyboard," was all I could say. I waited for  the sound of anger and rage to come from behind me. 

"When was the last time you saved," he asked in an eerily calm voice. 

"When was the last time I what?"

"Hit save." 

"Was I supposed to do that?" 

That night Ben went through my entire paper. He cleared out every last strange little symbol that didn't belong. He probably corrected my grammar and spelling as well. He printed it off and handed it to me. He was my hero again!

Ben keeps moaning. Sometimes it sounds like he is trying to say a word or two. I just don't know.

The doctors just tried a drug that they hoped would get him to react quickly. It was called flumazanol. It blocks benzodiazepines from brain cells. They said there was a chance that meds that had been given even a while ago might still be roaming around in him. This drug would block their effects. It would work quickly, with in a few minutes. Ben could be back in a few minutes. It didn't work. There was no response.

No response, save one. I saw a tear roll down the side of his face. I feel in my heart now, that he is very aware of what is going on. That he heard the doctor say how this drug would work. He was very hopeful. When it didn't work, he cried.


  1. Oh, My Dear God, and I cry with him. Such a frustrating time for all of you. Blessings.