I know some of you have been waiting to know what happened this morning with our doctor visit. Katy’s pain is as bad as it was when we took her to the hospital in July thinking her appendix was infected. I couldn’t get her to eat anything before we left home. Dr. Dye listened to her complaints but seemed in a quandary as to how to treat her since the steroids didn’t really do the job. We came home quite discouraged but within an hour I got a call from the NIH telling me that they are scheduled to have a conference call with Dr. Dye this afternoon. Dr. Dye had already called them! After the conference call today, Kevin O’Brien from NIH said he will call us to tell us what to do next.
I can’t even describe the feeling I have when these incredible people in Bethesda call us and help us without ever having met Katy. They’ve never asked to see her insurance card. They’ve never said, “I’m sorry, we cannot serve you unless we have a referral.” We feel blessed beyond belief. We are grateful to Dr. Dye for seeking answers to this mysterious illness.
I just spoke with the NIH Doctor that was so helpful when Katy was in the hospital. He called and talked to me about several aspects of Katy’s condition as it is today. With that information, we will go tomorrow for some blood work and adjustments on her medications. We will need to pray that Katy will respond to the new medications this week to avoid going back to TPN nutrition. Katy is going into this next bout of GI tract inflamation having gained back all the weight she had lost. She has also had good nutrition from the TPN and by mouth to build her up. She does have some reserves this time.Comments: