Friday & Saturday Update For Ben

Sorry there was no update yesterday. I ended up staying overnight at the hospital with Ben because he was very upset when we spoke with the doctor yesterday, but he was better today. Kaiser does not have WiFi, so I cannot use my laptop there. Cannot believe that they are so behind and do not offer it. Friday I didn't get to the hospital until about 12:30 PM. Ben was very alert. He kept wanting me to scratch his leg because it was itching him so bad. He and I were using our "alphabet sheet" to communicate a lot Friday. Still off the ventilator, his breathing keeps improving. His belly was soft Friday but still very distended. They did a Cat Scan on it Thursday night, but found no blockage again. That was why Ben was so upset. We met Dr. Manek. he told us how disappointed he was that they did not find a blockage and that according to the surgeons, there is no surgical "fix" at this time. We were back at square one. Dr. Manek is consulting with the GI doctors and he is trying too hard to figure out why Ben's intestines are not working. He mentioned that if they end up finding nothing after all of the tests that Ben may be this way permanently, which made Ben start to cry. Dr. Manek told us that he was going to do another barium scan on Ben because he feels that even though they saw nothing blocking the large intestine that there still may be a blockage of some sort in the small intestine. They gave him the barium right away. Ben kept telling me that he wants to live. I told him to focus on that thought and fight with everything he has and never give up. He keeps telling me now that he will fight and try anything to get well and NEVER give up. All of this made me feel so bad because I had just given him a pep talk about how he will win this fight and he will get strong and well and come home. He worked with the physical therapist for about 20 to 30 minutes, but his heart was not in it. He stared blankly into space while she was working with him. When I mentioned that I should get home because of the holiday traffic, he told me he didn't want me to go home that he wanted me to stay with him all night because he was so upset. I called my good friend Lynn who came over to the hospital to sit with me and she suggested that I try to go home to secure the house, get a change of clothes and my meds while she stayed with Ben until I got back home. I had to take the surface streets because the freeway was bumper to bumper stand still. When I got back to the hospital, they were taking the second x-ray after giving him the barium. Just as they finished, he threw up and he kept telling me he was worried that it would affect the outcome of the test. I told him I'd check with the doctor, which I did. Doctor said that they just might have to do the test again, we'd just have to wait and see. They said they would take x-rays every 2 hours. Lynn left for home and Ben and I settled down for the evening. He asked me where I was going to sleep and I told him that the chair made out into a bed. He told me I could sleep in the bed with him. I had to explain to him that the bed was too small for the 2 of us. I was not able to even start getting sleepy until about 12:30 AM. Ben kept dozing off and I thought he has finally gone to sleep, but once I got into bed, he kept waking me up wanting me to scratch something for him, or he wanted to tell me something, etc. plus the x-ray technicians kept coming in and the nurses kept coming in. Around 2:00 AM, Ben had me turn the TV back on. He told me he usually leaves it on all night anyway. I think I got about 2 hours of sleep. I kept falling asleep while sitting next to Ben's bed and once he told me to go home, but I told him I wanted to see the doctor because once I went home, I would not be back until Sunday because I needed to get some sleep, pay some bills, do some laundry, etc. The doctor came in around 11:00 AM, but he still had not gotten results from the radiologist. We talked about what happens if the test showed no blockage again. He said that Dr. Melman in Gastro is "on board" with him for trying to find out what the problem is. He said that they would probably do another colonoscopy to see if there were any blockages, scars, etc. on the inside of the colon/intestine and to see if maybe there was some kind of problem at the site of where the original colon surgery had been done. He even said that Dr. Melman may even be willing to bring in an outside specialist if needed, but I won't hold my breath for that. I told Dr. Manek that I will really be sorry when he is no longer on Ben's case because I'm afraid all of this forward motion will stop. He said he is hoping that he finds something before Wednesday when his time with Ben is up and that he will do his best to see that whoever takes over will try to push just as hard to find what the problem is if he doesn't. He was going to change some of Ben's nutrition so that his body will not start to break down due to malnutrition and he was going to continue the Lasix and put a bigger diameter NG Tube on Ben so that the fluids being suctioned out will come out faster. Dr. Manek told me to go home and get some rest and that as soon as he hears something, he will call me. He said it might not be today, but not to worry if possible. I left for home after that. Normally you do not wish for a blockage to be found, but we need prayers that they DO find a blockage so that they will know what the problem is and they will be able to fix it.