Omaha 1: Meeting the Team

Today has been a long day of testing and meeting people, a good day and one that makes us even more sure that this was the correct step to take.

First thing today we started in with x-rays, and then starting to meet the people who make up the team of medical professionals who are going to be taking care of John. The nurse coordinator came by and gave us an overview of the program. The GI doc told us that what he sees in the growth curve is that John's current shortness is a nutrition issue. The surgeon came to let us know that while they are putting in a broviac central line tomorrow that they aggressively look for infection and at this point that the thought of the team is that the weight loss/malnutrition that is currently going on is more life threatening to him that the possibility of a line infection despite his history of line troubles. The other thing that they are going to do while he is sedated tomorrow is scope him, basically put a scope down his throat into his stomach and small bowel during which they will get a sample of the contents of his small intestine and then be able to determine what is growing in there. That gives them the info for two things, one to know what bugs could be crossing the gut wall and aiming for the central line and the other is to make sure that his bacterial overgrowth is being treated with the proper drug rotation. John had several ultrasounds done today and also a meeting with the urology team and will be scheduled for more testing to determine whether he needs to have surgery done to manage his reflux.

It's nice to see them taking a very global approach. They told us today that liver damage from TPN can be lessened by getting at least half of his total calories through his gut. So while they are placing a line there is also an aggressive feeding program going on too. John is doing his part, eating, eating, eating. They are also going to be looking at probiotic therapy and dietary education for the parents. At the moment John is on a basic lactose free, diabetic diet, now that is something to get used to especially for the ice cream lovers in our family, ah that would be all of us.

So for the night we are settling in well, dad is staying tonight and through the line placement tomorrow and then he is headed back home.



He will be back next week in time to help John and I move from the hospital to the Ronald McDonald House, dad toured it today and said it seems to be a good match for us and a nice walk from here to there. John is NPO at midnight tonight in anticipation of surgery tomorrow so we are ordering food for him at 9:30p and getting him up to eat, drink and be merry until midnight, then hopefully letting him sleep in as long as possible in the morning. Tonight I am staying in the Nebraska house, the hotel that is attached to the hospital for the long-term patients families, for one last night of restful sleep before dad goes home.