The NIH has a study going the looks into gut abnormalities in CVID patients.
They think Macey qualifies. On Wednesday a study team nurse, Tyra called from the NIH to do a phone interview. She asked me several questions about Macey's symptoms, her diagnosis and her history. She said that Macey fit the type of patient that they were looking for. She wanted the last scope report, pathology report and latest labs. Those I was able to email her myself. One of the reasons I always ask for copies of Maceys' reports is because the turn around time with any office or clinic can be days. That's not always they're fault but they are so overwhelmed with many patients and Macey is my only priority. The nurse also said that they needed a summary from Macey's treating doctor and a recent history and physical. Dr. Kobrynski at Emory Children's Clinic has been handling the majority of the GI workup for Macey. Macey has a local GI doctor, Noel Israel but he has exhausted the number of ideas he has for this perplexing gut problem and has asked that Dr. Kobrynski lend her expertise because the immune deficiency might be complicating or skewing the testing and diagnosing.
Dr. Kobrynski emailed me today and said that she was going to work on the summary tonight. So I hope Tyra has it by the end of the week and can pass it on to Dr. Michael Yao who is the research doctor on the study. If so then we might know something by the first of next week.
Tyra said that based on the phone interview Macey would qualify for the study but Dr. Yao would have the final say so. She explained that we would be up there for a week the first visit and inpatient. There are some tests that can be done here locally before we go there. Once there we will also have access to a room at the Children's Inn and a $10 a day meal voucher. Transportation for the first visit will be up to us but if Macey has to go back up then she would be an established NIH patient and transportation will be covered by them. Either a mileage reimbursement for driving or a plane ride with the company NIH uses.
So now we just wait to hear.
Meanwhile Macey is staying in school pretty well. She has had several days of nausea but that seemed to get under control with some Zofran. They're also setting up at her school a cot so she can have a rest if it comes on more often and try to stay in class and not come home.
Macey has decided that she wants to participate in a pageant that her sister is going to be in later in the month. I think it's a great chance for her to build her self confidence and self esteem. We went out last weekend and looked for dresses. She found a beautiful red dress for casual wear and a friend of Katie's is going to loan her the formal wear dress.
