As much as I didn't want to we had too. Our monthly infusion was due. Wednesday we were scheduled to check into clinic at 10am, then on to physical therapy before we hit the pool. Unfortunately, as we pulled into the hospital Gary had an accident in his pants. There went the pool. It honestly instantly upset me because I thought it was over. He had gone for 24 hours without going potty so I thought for sure the next time it would be over which would have confirmed a virus.
When we went up to clinic, I was close to tears. I didn't want to run Remicade. I didn't want this to be an issue. The nurse asked me about meds. I looked at her and said, "I am having a moment. I need a minute. I am so frustrated. I am not frustrated which anyone here. I am frustrated with the situation. I thought for sure this was a bug." I went on and on. She was very comforting. In past months, she had not said much to me which I found strange. I wasn't offended by the way she was stand offish. People have their reasons. I am realize not everything is about me. So I just went with it. She was polite enough so. Suddenly, in the rawness of our emotions, she let it go. She had recently had a baby. I heard about but wasn't given details so decided to mind my business. As tears filled my eyes she let me know her newborn went 17 minutes without oxygen at birth. She said despite what tests say she does not seem to have the brain damage she says she does. Her baby is making the progress she is suppose too. They take each day one at a time.
I thanked her for sharing her personal experience with me. I told her it meant a lot. We laughed as I asked her not to tell them I was crying.
When our doctors came in we talked about a plan of attack. She gave me a couple different options. We could run the Cytoxan, IVIG, Methopred, and Pamidronate as planned. Then the next week another pulse with Remicade for what we thought was the return of his IBD. Second was to run the Remicade, methopred, pamidronate and wait on the IVIG. Push the IVIG and steroid pulse to the next week. I wanted to go with the first option. I wanted to give his bowels more time. This potentially still could be a bug. But what I didn't like is this virus is making his JDM go bonkers. Labs are fine but that matters not.
The hospital stay was the worst. Well, I cant think of others stays that matched but, shared room, very small, next to the nurses station. Our roommate had to dominate the bathroom because he was there for colon issues as well. Fortunately, Gary didn't not have to use the bathroom. In twenty four hours plus, we did not once enter the bathroom in our room. Gary used the urinal. I had to walk down the hall. I could list all the mistakes and details. All around, it truly was terrible. It was even more terrible when the doctor came in that evening to suggest maybe the return of Gary's diarrhea was from milk or from gluten. I was close to ripping out his IV and walking out of there. It is the style I am not use to but just the same it was the last thing I wanted to hear. Are you telling me we gave him Remicade because of simple intolerances? Why wasn't that explored before running three months of treatment. By the way that same treatment cured his diarrhea within 24 hours of running. How is that an intolerance. I was ready to run. I am not against it. It very well could be. But a biospy and blood panel said there was no evidence of that. The night was long. Gary was miserable. Although the IV start went very well, the infusions themselves were hard. I am strongly leaning towards having a port put in. His veins seems to be burnt or stripped or something. He acts like he is being infused with acid. I'm just so done with it. I know that doctors will be upset with me. I know my family will too. But I have to do what is right for him. He can't do this anymore.
Thank you Summer!