Thursday Update For Ben

Ben kept getting very angry with me today. He tries to tell me something and I cannot read his lips so he gets mad. A couple of times I just walked away from him and told him that if he could not stay calm, that I was not going to even try to understand him. I even told him that I was disappointed in him when he acted like he not fighting and that he was giving up sometimes. He told he he's trying to fight. His belly was still soft and I am praying that it continues to stay that way. I was told that a physical therapist came in before I got there but Ben asked if they could come back later, which I'm happy to say, they did. I've asked that they try to come when I am there so that I can help them work with him and sometimes I can get him to work with them when he really does not want too. He is still doing very well on the Aeromist. I talked with Burt (respiratory therapist) about the steps in weaning him off the vent. He said they use the Aeromist until they fell Ben can breathe without the mist. He said they sometimes us a portable mask instead of the humidifier they are using right now. They then put a smaller trach in his neck which makes him start breathing through his mouth, then they cap off the trach which will make him start breathing through his nose again. Eventually they remove the trach and put gauze over the hole. The hole will eventually close up on its own just like a pierced earlobe when you do not put a stud in it for awhile. When the P/T came back, she worked with Ben for about 20 or 30 minutes. She tried sitting him up on the edge of his bed, but he complained about his belly hurting, so she only had him up for a couple of minutes. She then decided she wanted to try to have him sit up in a special reclining chair. About 5 people came in to move him from the bed to this chair, but then he complained how much his back was hurting him. They said it's because his back muscles are so weak from lying in bed for so long. They made him stay in the chair for almost an hour, but he was hurting so much he started to cry, so I got the nurse and they put him back into his bed. I kept telling them they should just put his bed in the chair position and sit him up that way, which they did about a month or so ago. His doctor right now is Dr. Manek. I did not meet him at the hospital today, but he called me when I got home. He said that he intends to keep Ben at the hospital for quite awhile and is going to take more x-rays and consult with the Gastro department again. He says that if Ben's Ileus is not healing, that he feels they have not done their job. It's about time someone said something like that. He said that he is thinking about clamping off the NG Tube as not much is being suctioned out right now and he wants to see if Ben's intestines will start pushing like they should. He said he will also be in contact with Dr. Shantha to keep her updated on what is going on with Ben. He will be with Ben for a week.