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Wednesday, September 4, 2013

Darkness

I woke up this morning full of hope for the day. Stacey was coming out to stay with Dad while I went to a doctor appointment. After my appointment I planned to go see my brother.

I was excited to go see Ben. I just knew in my heart that there would be something new today. There would be a sign that he was coming back to us. I couldn't wait to see him.

In my mind I just knew what I would see. Ben sitting up, with his eyes open. Not able to talk yet, but able to respond none the less. He would at the very least be able to open and close his eyes when asked.

At my doctor appointment, the doctor decided I needed an ultrasound. While I wasn't surprised, it irritated me. It was going to be that much longer before I'd get to see my big brother.

When I finally got to leave the office I got in my car and headed to the hospital. Some where along the way I missed my turn. I had to get turned around and get back to the street the hospital was on. Five more minutes wasted.

I finally got to the hospital. I got on to the elevator. I got more excited and filled with hope. I got to the floor Ben was on and hurried down the hall. I just knew what I would find. I just knew Ben would be on the road to recovery.

I got to Ben's room. I peeked in. His arms were still moving in the aimless manner they had been. My heart started to sink. I entered the room, still convinced I would see his eyes open. They weren't. He just doesn't know I'm here, I told myself. I walked up to the bed. I put my hand on his forehead. "Hi, Ben," I said brightly and hopefully. There was no response. I tried again. Then again. I begged him to open his eyes. He thrashed around, but his eyes would not open.

I knew.

A neurologist came in. He explained that taking Ben off of the metronidazole was worth trying. He had been off of it for over 48 hours. If there was going to be any improvement, they should have seen something by now. While Ben presented with many of the symptoms seen in metronidazole toxicity, one symptom was missing. A classic symptom. Along with lesions on the corpus collosom, there is usually a lesion on the cerebellum. Ben didn't have that. It was most likely that metronidazole toxicity was not the issue.

Ben's condition would not improve. He would need skilled nursing care for the rest of his life. He would never regain any of his previous abilities.

I realized at this point that I was being prepped. I was being eased into what was yet to come for the day. The doctor left.

I begged Ben to open his eyes again. I tried to make out words in his moans. I wished to see purpose in his movements. None of these things happened.

Ben's nurse came in. She asked if the doctors had called me. I told her no, and she said she'd page them to let them know I was here. They wanted to talk to me. A spark of hope came across my heart. Maybe they had a new idea, maybe they had a new treatment to try.

Two female doctors came in. They introduced themselves and asked me what I understood about what was going on. I told them. They started telling me that Ben's blood pressure had been very low. They had been giving him fluids, but his kidneys were not tolerating it.

I knew what was next.

I stopped them and asked if I could call my sister and put her on speaker phone. I knew she needed to be a part of this conversation. Luckily, she was still at my house. Willie had just gotten home and could stay with Dad. The doctors said they could wait until she got here and have the conversation in person.

I know in my other posts this is where I would put in a story about Ben and I as kids. Something light hearted. Something a little silly maybe. Tonight, I can't think of any. My heart is broken. All I can think about is the last time Ben was at my house. I was cold to him. I was only half listening to him. I was trying to get Dad to bed, and Ben was hanging around longer than I thought he should. All I could think about was him leaving so I could get Dad comfortable for the night. I was rude. I was a terrible sister. 

The doctors sat down with us in a conference room. There is never anything good that comes from sitting in a conference room with doctors. Tonight would be no different.

Ben's kidneys were shutting down they said. His blood sugar had been spiking because his pancreas was also shutting down. They were very kind and very gentle as they told us. His liver was continuing to fail. He was not a candidate for dialysis. His quality of life would never improve. He was no longer qualified for a liver transplant. The feeding tube was probably causing more pain than hunger would. His movements were no longer voluntary, they were due to the disruption in brain patterns due to the lesion in his brain.

It was up to us what to do next. They could continue on as they have been. They could keep sticking him with needles, keep feeding him through a tube. A tube that was irritating the inside of his nose to the point of it bleeding. They could keep playing the balancing game between his blood pressure and his kidneys. His sodium levels were also spiking due to the failing kidneys. They just couldn't keep up any more.

As I've said before, Ben hates needles. This body, this shell, this prison that Ben was in was not going to change. We could prolong his torture, or we could let him go. We could put the decision in God's hands and Ben's. We could give Ben the final decision of when he would slip away from us. He deserved that.

Stacey and I went out to the garden area outside the hospital to talk. There was a little pond, colorful flowers, and benches. We talked. We called Willie and asked him to put the phone on speaker so we could talk to Dad. We explained everything in terms he would hopefully understand. He seemed to agree that what we had decided was for the best.

We went back up to the floor. We met with the doctors again. We decided to let Ben be free.

The doctor came in and took out the feeding tube. The IVs would remain. They would be used to give him pain meds. Once the IVs failed though, new ones would not be put in. There would be no more needles in Ben's life. His foley catheter would stay to keep his skin from breaking down any further. He would be made as comfortable as possible.

8 comments:

  1. I am so sorry to hear this. I met Ben on Facebook and he was so clever with words (I am a linguist and he found great linguistic materials to post). I really appreciate and treasure that I was able to meet him even if it was in cyber space. God bless and keep you and your entire family.

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  2. Oh Becky, I am so very sorry. My heart goes out to all of you. Such terrible sorrow to bear. Ellizabeth Keggi

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  3. My heart is hurting for you, Becky, and I'm praying that God will hold you close and pour grace and mercy over you. I'm praying for Ben and your family. Such a hard time. I'm so sorry.

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    1. Thank you Kathy. I do feel God's love. I know he is doing what is best for Ben.

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  4. Becky, first, I want to say I'm sorry you're going through this. It's SO hard to lose a brother. I've lost both of mine.

    Also, stop beating yourself up! From reading these blogs, I think you're a wonderful sister!

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