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Monday, September 2, 2013

A Glimmer of Hope

Saturday Ben was moved out of the ICU. Not because there had been any great improvement, but he seemed to be no longer declining.

With the new room on the new floor, came a new group of doctors to work on his case. At first I was a little frustrated by that idea. I had to tell the new doctors the whole story over again. They asked questions I couldn't really answer about the first few days when he was in the hospital in Des Moines. I answered the questions I could.

One of his new doctors was a resident from Spain. He seems to be a very gentle soul. He found a way to talk about whether it was time to make Ben a do not resuscitate. He spent a lot of time talking to me. He seemed genuinely concerned not only for my brother but for the family as well. He started talking about the possibilities of what still might be causing Ben's condition. He was confused about what exactly might be causing it but I got a definite sense that he was determined to figure it out.

When we were kids, our parents didn't have a lot of money. We got by, but there was rarely money for extras. There was no health insurance. When we got sick, there was very rarely a trip to the doctor. I only remember twice, when I was a kid, when I went to the doctor when I was sick. 

One day when Ben was in high school, I think, he came down with something. We didn't know what. All I remember for sure is that he was in pain. He was in on his bed, bent all up in a fetal position, moaning loudly. I kept peeking in his room to make sure he was ok. He looked awful. 

Mom and Dad were in the living room trying to decide what to do. They wanted to take him to the hospital. They talked back and forth. At some point I realized that the hold up, wasn't that they didn't want to take him, but they couldn't afford a trip to the ER. They argued back and forth. My dad was ready to take Ben, Mom said we should wait a while and see if he got better. 

I went back to my brother's room and watched him. He was pressing his arms up against his abdomen and crying out. I looked back to my mom and dad and they were still arguing. There just was no money. No way to afford it. He needed to go. He was very ill. He didn't have a fever. Let's wait it out. They continued back and forth and back and forth. 

I went out to the living room and yelled at them, "he needs a doctor, he needs to go to the hospital!" Tears were coming from my eyes. My mom looked at me. She grabbed me and hugged me. 

"He's going to be ok," she said calmly, "we just have to figure out how we can work this out." She hugged me again and sent me off to my room. 

Somehow, I still had my birthday money from Gran and Grandpa. It was twenty dollars. To me that was a LOT of money. Surely it was enough to make a difference. I went to my dresser. I got my money out of its secret hiding place. I looked at it. I went back to the door and peeked in at my big brother again. I looked at the money again and thought of the stuff I could buy with that treasure trove. My brother cried out again. 

I went out to the living room. My mother looked at me and told me to go on back to my room. I held out my hand with the money in it. "Is this enough?" I asked. 

Mom looked at me, a smile came across her face. She looked proud of me. "No, honey, that's not enough. You keep that it is yours." 

" I know, but if it will help..."

"No, you keep your money," Dad told me. 

Dad took Ben and they went to the hospital. 

Sunday night Stacey went in to the hospital. She met the Spanish doctor for the first time. He asked her if Ben had been on metronidazole before his hospitalization. Which he had, many times since February. He had read a study that metronidazole toxicity could cause the same symptoms that he is having. Including the lesion on his brain seen on the MRI. He had taken Ben off of the metronidazole. He seemed reservedly hopeful that maybe, just maybe this could be the problem.

After hearing this from Stacey, I took to the internet. I found a case study of a 57 year old with cirrhosis of the liver who had been treated with metronidazole, for a different reason than Ben. The man in the study had come down with the same symptoms as Ben, including a lesion on the corpus collosum. Once taken off the drug, the man started to react within two days. His symptoms started to fade. In six days many of the symptoms had cleared. It took him a month to get completely back to normal, but he did. AND the lesion on his brain, it disappeared too.

Maybe this was it! I debated whether to tell dad. I didn't want to get his hopes up and then find out that it didn't work. Dad had a hard time when we were there on Sunday. It was getting harder and harder for him to see Ben in such pain. When we got home, I could tell he was depressed. I went to bed, and didn't say anything.

This morning I got up and decided to tell dad. He hadn't slept all night, he was still very sad. He deserved a little hope. I was very clear that it might not work. It might not help, but it might. If it did, I told him, we might even be able to see a little difference today. His eyes sparked a little, he perked up and wanted to go see Ben.

When we got to the hospital he did seem different. Wishful thinking? Maybe. He seemed angry. He looked pissed off. He still seemed to be in pain, but he seemed to be fighting. The moans were different, too. Some of them were more from the throat instead of the sinuses. His tongue seemed to be trying to form words. Maybe we were just seeing what we wanted to see, but he did look like he was fighting. Like he was trying to punch his way through a wall that was keeping him from communicating. It was very different from previous days, even just yesterday.

Dad left the hospital sitting up a little straighter in his wheelchair. He seemed to have a little more hope. Maybe his son would still out live him. The way it's supposed to be.

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