Monday Update For Ben

Those of you who know me well know that I am not an "overly" religious person, however, today the Lord showed me a miracle which I will tell you about later in this update, and I hope that all of you will praise and thank the Lord for this miracle. First I will tell you about the morning. I arrived in Ben's room around 9:40 AM. He was sound asleep and I could hardly even get him to open his eyes. I like it much more when I find him awake when I walk in. His vitals looked good except for a slight fever of around 99.8°. My social worker came in and introduced me to the social worker who will be taking over Ben's case next month. Nat, my current social worker is an Intern and will be completing her Internship at Kaiser and moving on, so now Jennifer will be my social worker. While Ben's nurse Letty was in the room this morning, Ben seemed to be "choking" a lot and Letty told me that he was having a lot of trouble with spittle in his mouth and throat today. Ken the respiratory therapist came in and said that Ben had once again failed the breathing trial this morning. Letty told me that Dr. Mason had ordered a cardiac chair for Ben, which I knew about yesterday, but Letty felt he was too weak for one right now. Ben's stomach was still soft from the parecentesis yesterday, but it was already starting to bloat back up some. However his arms and hands were not swollen at all today. Dr. Mason came in and I asked her how are we going to make Ben's future doctors be more aggressive like her when she is no longer his doctor and she said that this could be a problem. She said she is trying to work with some of the ICU doctors, especially one who is aggressive like her to see if they will help us with this possible problem. She had also called the physical therapy department and said she was upset because they told her that Ben is not strong enough to work with them, so they don't come to his room. Dr. Mason told me that she does not agree with their policy, but that there is not a whole lot she can do when it's the financial side of Kaiser that makes this policy as the physical therapists are contracted. She told the nurse that she wanted Ben in the cardiac chair (if it arrived) this afternoon if he was more awake. Awhile later, Dr. Han from the Pulmonary department came in from ICU. She also told me that they are still running cultures on Ben and that she is having an Infectious Diseases doctor and a Hematologist to come in to see Ben to make certain there is nothing else going on. I sure wish she could be his doctor all of the time. Ben's nurse Letty was there when Dr. Han came in. He told her that he wants Ben either in a cardiac chair or for her to set his air bed in the chair position so Ben can sit up because he said Ben needs to move around more and it's time to get aggressive. I think he's one of the doctors that Dr. Mason is trying to work with on this. Letty and her nurse's aide tried to set the bed into its "chair position" but it wasn't working right plus Ben started screaming and making faces when they were raising the head of the bed, like they were hurting him when they were trying to do it. They finally gave up and said they are going to put in a call for someone to come in and try to make the bed work. Ben looked very relieved. NOW for the miracle. After the nurses left the room, I was telling Ben how sorry I was that they were hurting him and that I wished there was some way he could tell me what was hurting when they were moving the bed. His lips were trying to talk to me but I could not understand. I sat in my chair next to his bed holding his hand. He then tapped me on my arm and when I looked at him, he was moving his hands and arms at me like he was wanting me to come closer to him, which I did. I looked at him and he was able to make throat noises and I heard him say "come closer", which I did. When I was close enough to him, he brought his hands up to my face. He moved them down to my neck and throat and he then started pushing his knuckles into my throat as hard as he could. I then asked him if he was trying to tell me that they were choking his throat and trach when they were moving the head of the bed and he "croaked" out the word YES! It was amazing! He actually figured out a way to tell me what the problem was. I told him "thank you for figuring out a way to let me know" and he nodded and made some silly faces at me. I told the nurses and they were also amazed. Letty came in and apologized to him for choking him. She said it was good to know that he could communicate that way and that they will try the bed or the cardiac chair again later because now we think he understands that it will be good for him. At first we thought he was just afraid that he was going to fall out of the bed or something. This morning Ben was sleeping so much that I was going to leave early today, but then after the episode with the bed, he was wide awake so I stayed later than I had expected. I think he has discovered how to make throat noises now and he was trying to talk to me all the rest of the time I was there. I convinced him to do some muscle/joint exercises with me and he was being very helpful in doing them. He did a lot of the movements himself without me helping him. I'm hoping that he has gotten an idea now that all of this is going to help him get stronger and get well sooner. When it was time for me to come home, I told him I was leaving and he "croaked" out "OK" and smiled at me. I told him "I love you" and he "croaked" out "I love you too". As I said at the beginning of this update, I am not an "overly" religious person but I was thanking God all the way home for this "miracle".