Home=Gain

Well I have been home eight days now. I have a home nurse visit me twice a week to take my blood for lab work. She weighs me too. She weighed me the day I came home and I was 9lbs. Four days later she weighed me on the same scale and I was 9lbs 15oz! The day of discharge Mom had a feeling the doctors weren't going to let me go home because I had not gained any consistent weight. Well thankfully Dr. Nasr was on duty that day. She came in on rounds and told us that the intestinal failure team (positive name huh?) wanted me to stay for 5 more days. Dr. Nasr knows Mom all too well and said she told the team that we were going to go home because she didn't want Mom to have a nervous breakdown. Mom was also going to tell them I needed more calories if I was going to gain. The team of doctors had also discussed that in the morning and I went up to 22 k/cal formula. I have hit a plateau for the past few days and have not gained very much. I go up by two cc's in my NG feeds tonight so hopefully that helps a bit. Hopefully I don't have to be on TPN much longer. My labs came back and my liver enzymes have been climbing at a quick rate. I have to go to U of M tomorrow to have an ultrasound done. I was at U of M today for a physical therapy evaluation. They said I am a little behind, but that is expected since I have spent about 4 months of my 6 months of life in the hospital. Plus I am underweight and when I catch up I should be just fine. The CF and intestinal doctors both see me on Wednesday. They will probably be adjusting my calorie intake because I am a bigger boy since they saw me a week ago. A whole pound bigger! Mom and Dad want to thank everyone again for the cards and gifts they still receive in the mail, the meals, the great messages I get on the blog and the thoughtful phone calls. These kind gestures constantly remind us of the great people and support we have pushing us through this tough tough journey life has tossed us.

Kicks and kisses,

Ben