June 5, 2007

Today Nora’s feeding schedule was changed back to all G-tube feedings for at least 24 hours because she couldn’t tolerate the 3 bottles a day with G-tube feedings at night. She had three big watery poops and lost 3 ounces today. :( But overall she is still doing very well for everything her little body has been through. Dr. Patterson (her doc at TMH) is working with the doctor in Boston (Dr. Puder) to get her on Omegaven as soon as possible, hopefully by the end of this week. The only thing holding us up at this point is getting FDA approval since Omegaven is still a trial drug. As long as things continue to go as they have been the plan is to have her home by early next week. All of the details for home health care are being worked out and the wonderful staff at TMH are getting us lined up to head home. Yay! The next step is to head down to Shands for an evaluation with their gastroenterologist and then up to Boston for an evaluation with Dr. Puder and the team and Boston Children’s Hospital.

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