Are you kidding me? We finally got a phone call from a dietician yesterday afternoon. Yep, Paul was sent home from the hospital last Thursday with no real information about what to eat and what not to eat or any real advice at all. He was told by his doctor this is just time for experimenting...try whatever you feel like you can handle. He told Paul not to stress about eating too much because the TPN would give him his nutrition.
I don't blame the doctor for not giving us more information, but I do feel like the dieticians should have met with us. The only reason why I knew what "dumping syndrome" is because I did research on my own. Through that research I also discovered that Paul should drink either 30 minutes before or after a meal (but not during), that he should be eating six to eight small meals a day, eat high protein, eat very little sugars, don't eat fresh fruits and vegetables, and a few other dietary guidelines.
Paul had a dietician assigned to him in the hospital. He is the one who determined how much to give him in his J-tube feedings and PPN. He was in the hospital for 11 days. The dietician met with him personally one time to tell him they were going to change the J-tube feedings. I never met him. Don't you think in the 11 days at the hospital, someone could have met with us to tell us what we needed to know about his dietary needs?
Paul had been home for five days before someone finally called. It was a dietician from the Home Health company we are using. She asked him how he was doing. He told her that we were a little frustrated because no one had really bothered to give us much information about his dietary needs or address any concerns we might have about it. That is when she told him that due to the holiday, no one was able to contact him sooner.
Sorry, not trying to sound too cynical here, but cancer doesn't take a holiday! I have noticed that it is quite difficult to get the help you need during the holiday season. Granted, the hospital was very busy, which I am sure does not help the staff who is working. Truthfully, the only people I really noticed that didn't give us much attention or help us was the dieticians and the respiratory team (oh yes, and that one nurse who totally neglected Paul in his time of need).
Paul came home with some lung congestion that was affecting his oxygen levels...fortunately our Home Health nurse detected that and told us the breathing exercises he needed to be doing to clear his left lung. Thank heavens it worked!!! Ironically, no one caught it at the hospital even though his oxygen levels were about 92. In addition, she explained the redness and swelling in his left arm was due to phlebitis. We had asked the nurse earlier that day about it and she just said it was nothing. The Home Health nurse told us to use heat compresses on it. I wish the nurse at the hospital would have told us to do that...she just looked at it like she didn't know what it was. Fortunately, the phlebitis has also been clearing up on its own....it did look pretty scary for a while (the redness was moving up his arm).
All in all, I am grateful for the care Paul received while in the hospital. I have realized the value of a great nurse and the CNA's who help them. They are definitely the patients advocate!