Ryder's weekend

Ryder has had 3 good days in a row without vomiting and very little pain when he urinates. He went from screaming and rolling in pain when “dribbling” some urine very often to only stopping his activity and holding his diaper when he pees. He was having bladder spasms. The doctors started him on Ditropan tonight (muscle relaxant). We had to put starting the feeds through his GJ tube on hold until these spasms and the pain is under control. The down side to this medicine is that it slows down other body functions- like his GI tract which is already very, very slow. The doctor will monitor his reaction to the Ditropan and if all goes well we will start the feeds in 48hrs. The feeds will start slowly at 5ml/hr. We will increase the feeds very gradually after a few days at 5ml/hr. Our goal is to get him up to 45ml/hr without any vomiting. If this doesn’t work, Ryder will have to be on TPN (total parental nutrition= getting all nourishment through his veins.) This is what he’s been on for awhile. It is a last resort alternative and isn’t preferred due to the increase risk of sepsis (blood infection) since there is a direct line to his veins. We will be praying for a good outcome and that his body can tolerate feeds into his GJ tube/intestines. Thank you all so much for the visits and calls/messages. They help make these long hospital days seem shorter. There is still no end of this hospital stay in site. Some fun news is that Make-A-Wish contacted us!!!! I’m thinking Disney Cruise, Disney World or Disneyland/Universal studios. Any other ideas or input?