Today was an extremely frustrating day for me. First of all, I had meetings at Weber for most of the day so I wasn't able to get to the hospital until about 3:00. I missed when they showered him so I wasn't able to see how he reacted. For the last 4 days, I've been trying to convince all of the staff, especially respiratory that Lynn was coughing up not only secretions but his tube feeds which would mean he was aspirating. He was also doing a lot of burping and bringing up some into his mouth. They all told me that it was just his secretions and that they were the same color. I told them that secretions were not supposed to smell like formula but they just kept blowing me off. Finally this afternoon, he was struggling with gagging, continuing to cough up copious amounts of "secretions" and I mentioned it again to one of the respiratory therapists who had not had him before. He was actually pretty condescending to me explaining to me that secretions looked like feeds and that all the other patients looked the same way. When he was I wasn't convinced, he said that an easy way to tell would be to put blue dye into his feeding bag and see what color he coughs up. If the secretions were blue, it would prove I was right, if they were not clear, it would prove I was wrong. So we did it. Guess who was right? So now we have everybody's attention. First they were talking about having to change his PEG tube from being in his stomach to being into his Jenunum (small instestine) which would involve a surgical procedure. They also talked about putting a larger trach in. The day charge nurse turned down his rate of feeding which made me really nervous because he has to have a certain number of calories to sustain his metabolic issue. I told her we can't be doing that unless we are also going to be checking his ammonia levels regularly. I do have to say though that the day nurse that was actually assigned to Lynn was very good and totally supportive of me throughout all of this. To make a long story short, when the next shift came on, the respiratory therapist (now that we had their attention) was very proactive. The charge nurse was awesome and he asked me if he was getting anything for acid reflux. I said that yes, he was getting prolosec every morning. When he went to check what dose he was getting, he couldn't find the order. Turns out that the order never got transferred from the U. So he has not been getting it for the whole week. The charge nurse said that he would write the order for twice a day and that he would also make sure there was ammonia level drawn in the morning. By the time I left, Lynn was calmer and resting quietly. Well, he's always resting quietly. The Bishop was there for a lot of this and since I was a basketcase and crying, I had him give Lynn a blessing as well as me. I am feeling more calm now and am hoping to get a good report in the morning. Please continue to pray for Lynn. I know all of you are. Tomorrow I plan to spend a quiet day watching General Conference with him. Until the next post...