On Monday and Tuesday, Gene had a lot of problems with nausea—even vomiting at times. Added on to that is that he had an area on his butt that really concerned me, and is very painful to him. Patti was here yesterday morning and we (Patti, Gene, Rebecca and I) discussed what was going on with Gene: ~ Patti confirmed that the area on his butt is a class I bedsore. We discussed various ways to approach this, especially with the area located where it is very prone to contamination. ~ Patti felt there were other options we could try to help control Gene’s nausea. Zofran tends to be a first line approach, so we can increase that, add meds to it, or try a totally different medication(s). Patti suggested we try adding ABHR gel and see if that helps. For more information about this gel and his nausea in general, see http://tinyurl.com/9n5zbl2 Patti left to get some supplies for Gene and to contact Dr. Gessner about Gene’s pain and to (finally!) get some clarification about his plans for adjusting Gene’s pain pump. When she returned, she had the ABHR gel for us to try and a cushion for Gene’s chair that might help (he reports this morning that it is better). Patti also brought some different approaches to his bedsore that we can try: two different types of bandages, some baby wipes and some skin prep wipes that create a ‘second skin’ barrier. Now to the last topic, and the reason why it has taken me so long to post this update. Patti did get to talk to Dr. Gessner. First, he was not happy that Patti was calling him to report Gene’s pain level when he had been getting reports that the Vicodin was helping.* Second, he was blunt with Patti that we need to understand that if Gessner increases Gene’s pain pump medication, Gene may go to sleep and never wake up. Patti told him she believed we did understand that. Dr. Gessner then informed Patti that ‘believe’ is not good enough, and she needed to get a recognition that we do understand that. As Patti recounted her conversation with Gessner, Gene and I were slapped in the face by reality (seems to be a lot of that going on lately for us). We have decided to stay with the Vicodin for now and see if Gene can handle the pain. I have also been approved for a volunteer for 3 hours once a week. As I go through this, I find that I am accumulating information that I don’t have time to read, emotions that can’t be addressed and events/thoughts that I don’t have the time I need to process through. I really need some time to just disappear alone to deal with those tasks. When I set up this website, I wanted it to serve as a communication point—not just for me, but for each of you. Here in this journal, please give me your opinions about Gene’s status! Add to the timeline, lifestories, pictures—anything you want throughout the site. I share each entry on here with Gene, and I know he would love to hear your stories, your comments, see your pictures. He needs the smiles, laughter you can bring him with your entries. *What makes it difficult to evaluate Gene’s status is two-fold: 1) the reliability of what he reports when asked; and 2) what is currently making him uncomfortable shifts so fast.