Tuesday morning Dad and I woke up and started our usual routine. I had remembered that my dad ate a lot of poached eggs when I was a kid so I decided to try to make him poached eggs for breakfast. With the stress of the weekend I wanted to make him a breakfast he would enjoy. One was a success, one was not. He ate them both, because that's just how he is. The phone rang, it was my sister.
"They are no longer going to send Ben to the nursing home." She said. "The doctor said he took a turn for the worse overnight and they are going to transport him to University of Iowa. He is no longer forming any words. He is responsive but just can't make words." My brother is a very verbal very wordy person. Asked a yes or no question he will give you a 15 minute answer. He was one frustrated person.
"Thank God," I told my sister. She went on to explain when it looked like they would get him transferred. Transferring from one medical facility to another is a long process. All of the stars in the universe have to align just perfectly and then it will take two more hours beyond that. I got things all packed up for Dad to spend as much time at the hospital as he was comfortable. I packed extra jeans and underwear, just in case of accidents. I got his meds all together and made sure he had his glasses.
I called my kids and let them know what was going on with their uncle. They each headed out to.our house to wait for the call that Ben was on his way. Finally about 2:30 pm the call came, that would put him in Iowa City between 4:00 and 4:30. About 4:00 pm I started the process of getting Dad to the car. I pushed his wheel chair down the hall, carried it down the front steps and locked the brakes. Dad got his walker, stood up and slowly struggled his way down the hall and down the steps. In his wheelchair I walked him around the house and to the car. Once he was inside the car I put his wheelchair in the back. The rest of us all climbed in and we took off for the hospital. We got to the emergency room and they took my dad, my sister and I back to the room my brother was placed in. The ER staff seemed a little confused as to why he wasn't just taken to the floor. They ran tests, a rather unpleasant neurology intern kept running in and out yelling at my brother like he was deaf. My brother was still able to understand. He could respond but not with words. He was laughing some at appropriate times and crying at appropriate times. He was trying to ask me something and I couldn't figure out what. I looked to Stacey and she said he might be trying to ask me why I was doing this. I looked at her perplexed. She continued that he had asked her that the day before. We as siblings had had our differences. Some more severe than others. I looked to Ben and asked if that's what he was trying to ask. He looked at me in a way that I knew it was. I just looked at him and said, "you're our brother, how many brothers do you think we have?" He looked at me, tears rolling out of his eyes as he reached out to hug me. I hugged him back as he kept crying.
A friend of Ben's from his church came to the hospital with Stacey. He talked to Ben and even chanted to him. Ben tried to chant along with him.
Waiting in an ER exam room is awful. The bed that Ben was laying on was uncomfortable, he kept putting his legs over the rails trying to crawl out. The chairs for visitors are really ancient torture devices cleverly disguised as modern furniture. It was after ten when they finally moved him to a floor. He was put on the Neuro floor.
From the time he got to the floor he started another decline. He stopped responding to me as much. He wasn't making eye contact as much. He was moaning rhythmically. There was a change. I stayed the night in his room. As much as he had been fighting to get out of bed I didn't want him to end up falling. About 4:00 am he settled down and seemed to be resting. I dozed off as well. When I woke up, Ben had declined further. He was now not following verbal cues. He wasn't following verbal commands. He was however still pulling away while the lab personnel took his blood.
My brother is needle phobic to a very severe extreme. He leaves the room when my dad even needs his finger poked for an INR. He will recoil if someone is getting a shot..... on TV. The fact that my brother was still fighting back against needles was, well, a good thing in my eyes.
A barrage of tests were ordered. Many IVs were hung. A decision was made to move him up to intensive care. More tests were done. An EKG, an EEG, blood tests, urine cultures, chest Xrays. Still no real answers. In the afternoon they decided to do a spinal tap. I told the doctor under no circumstances let him see that needle. He would freak.
They came in to do the tap and asked my sister and I to leave. We went downstairs grabbed a bite and headed back up. They were still in the room. We went back down to the waiting room for a few minutes. When we went back again they had just finished. The nurse came out and told us they weren't able to get the fluid. In a weird way we were both happy. Not that they couldn't get it, but maybe it meant he fought it, that he was being Ben. She went on to say he did great with it, they just needed weren't able to get in. Our faces must of sunk because she looked at us oddly. "It's good that it didn't bother him," I explained, "but it was very bad that he was a trooper." That was NOT Ben. That was not what we were hoping to hear.
Stacey and I decided to head home and get some sleep. We got home and explained what had happened throughout the day to Dad. He seemed to understand.
This morning I called before I came back into the hospital so I could give Dad an update before I left. Ben was the same as the day before. He had some swelling that they wanted to check out and were sending him for a CT scan of his abdomen. They had put in a nasal gastric feeding tube to start giving him a medicine to lower his ammonia level and see if he responds to that. The liver doctors don't really believe he has hepatic encephalopathy, but it certainly won't hurt to try treating him as if he did. After getting Dad his breakfast and showing Stacey where everything was I left for the hospital.
When I got there I saw that they had put him under contact isolation. If I wanted to touch him I needed to wear a gown and gloves. The CT scan had shown some fluid on his abdomen. They wanted to do a paracentesis to analyze it. Make sure there wasn't an infectious process going on there. Ben has had paracentesis before. Liver disease can cause fluid to fill the abdomen. Sometimes this fluid needs to be removed to take pressure off the other organs and make him more comfortable.
I'm now in the waiting room while they stick my brother with yet another dreaded evil needle. There is still no real answer. He is turning into a science experiment. The only choice they have is to check for everything and hope they stumble upon the answer.