September 14, 2011
They removed the neckline from Keean that was the supply for the TPN (IV nutrition). They told us being he hadn't used it for awhile they wanted to reduce the risk of infection and get rid of it. I was completely 100% ok with this. They informed me if he would need to go back on the TPN that they would put a more permanent port in anyway. So, our goal was to sit and watch Keean gain weight and wait for the other test results to come in.
I have to fill everyone in. When the first doctor spoke with Trevor on the 2 more serious things they were testing him for, he made it sound like both Auto Immune Enteropathy and Microvillus Inclusion were fatal. Trevor and I did not care for this GI doctor much because he was so negative and serious all the time. Every time he walked into the room I would get a pit in my stomach because I thought something was wrong. I didn't like it. After the first test results came back negative of the Microvillus Inclusion, it was a relief. I knew it was the lesser of 2 evils, but the GI doctor had led us to believe that the other one wasn't too far behind in how critical it was.
I had hoped that the test for the Auto Immune Enteropathy would come back a few short days after the first test for MVI. But, this was not the case. I was sleep deprived and anxious, but that was when the GI doctors did their rotating and we were again with our favorite GI doctor we worked with while we were there (we actually still see her today).
I remember when she came in to evaluate Keean after they removed his neck line. She came in and I immediately started asking her questions about what it would mean if Keean had AIE. She told me that AIE was treatable. It would most likely mean that we would have to suppress his immune system which would increase his risk for infection, but it wasn't as complicated as MVI.
WOW! Really? This would have been great information to know.....like from the beginning of this testing experience. That was when I decided I wasn't going to see the other doctor again. He was too negative for me. Yes, I know some doctors are just straight forward and honest, but this doctor was more than that. He had me feeling hopeless and it was absolutely devastating to listen to the things he would say. He was worse than Dr. Google in my book. I had the nurses erase all the negative words off the white board in our room and decided we wouldn't talk about anything but weight gain and happy thoughts. I couldn't do negative anymore. It wasn't helping anyone and I was so thankful to be done with the doctor I just didn't "click" with.
I do need to say.....he probably is an excellent doctor. He probably does great and wonderful things and has probably figured out many mystery patients in his time, but one thing I learned on my journey is to stick with your gut and go with the doctors you feel most comfortable with. Everyone has their own style. And mine was trying to stay positive......not only for myself, but for everyone around me.....especially Keean.