Sunday Update For Ben

Ben was wide awake and watching TV when I walked into his room this morning around 8:45 AM. They had the back of his bed up a little higher so he was sitting up a little more and he looked very comfortable. Usually he's all scrunched down and does not look comfortable. His vitals were good except that his breathing was a little higher than usual. They were going to try the breathing trials on him this morning, but he failed because he was gasping. This is NOT a good thing because they need to do the breathing trials to get his lungs stronger so they can wean him off of the ventilator. Ben asked me for some water. He cannot have anything "by mouth", so I got a swab and used it on the inside of his mouth and then put some ointment on his lips to moisten them up some. His arms and hands were a little more swollen than they were yesterday, but that's what happens when they give him nothing but fluids. His nurse Antonette told me that he had spiked a 103° last night, but they had given him Tylenol and it was down to 97.6° around 9:30 AM. They were giving him frozen plasma again to prepare him for today's parencentesis. They have to have his INR levels just right so there won't be any bleeding. They respiratory therapist came in again around 10:00 AM and tried to put him on the breathing trials again, but after 6 minutes, she put him back on the vent. She said that he has trouble breathing because of his distended belly and that she would come back after they did the parencentesis because after they get the fluids out of his belly, he should be breathing better and should be able to do it. Ben began to doze off around 11:00 AM and at 11:30 AM, the GI doctor (Dr. Schlussel) came in and did the procedure. Today he took out 6 liters of fluid. Last Thursday they only took 3 liters. I stayed in the room when they did it this time and it looked like bottles of beer and even had foam. Dr. Schlussel said the problem with this procedure is that it removes all the good proteins in his body along with the fluids. Lanny came by just as they were finishing up the procedure and Ben was sound asleep by then. Lanny stayed to talk with Dr. Mason. She is Ben's doctor until Wednesday and I sure wish she was going to be with him longer because she is the very first doctor at Kaiser to be "aggressive" in the 5 weeks he's been there. She wants to try to do a parencentesis procedure at least every other day to try to keep the fluids out. She feels that this way, they can work with him more on the lung exercises and eventually wean him off of the ventilator. She wants to try to get him moving more by sitting him up in a "cardiac chair" and she said she is going to try to get the physical therapists to come in more often. She said she is going to try to work with one of the ICU doctors who is also a more "aggressive" doctor. I hope this works to get Ben stronger. I still think it is so stupid the way Kaiser changes the doctors who are on the case every 7 to 8 days. It sucks! I asked if the hospital had someone who came in a cut patients hair, but they told me no. I thought maybe a volunteer came in or something. I'm going to check with my social worker if she knows someone we could get because Ben's hair is getting really long. Lanny and I both left around 2:00 PM and Ben was still sound asleep. Dr. Mason said the procedure tired him out.