So Dr, Fisher said that the IRP team has been seeing her for a year now. All the test that they have run have given them no answers, no definition to her Autoimmune enteropathy diagnosis that Cincinnati gave her 2 years ago. Nothing that they have tried to do has worked for her to get her to tolerate her feeds. or eating orally. She is fully dependent for 22 hours a day on TPN with lipids. (No that is not her rolling backpack for school she is carrying around, it is about 10 pounds of her daily nutrients and calories being pumped into her heart) The other 2 hours of "Tube free time" she has Ethanol injected into her central line to keep her from getting another life threatening infection. They are stopping her anti-rejection meds and weaning her off her prednisone that she has been taking for 8 years. They want to "clean the slate" and see what her body does, since "they" themselves have never seen Hannah have over 30 bouts of diarriah in 24 hours, or puke up everything she eats, and been in a normal pain scale range of between 6 - 8... daily, her "clean slate" normal! I do not look forward to the next few months, having to watch her live a life of being Undiagnosed is more frustrating than if I had to live with myself. At 10 years old Hannah is the strongest person I know!
So we call in her weight weekly and then they will plan on surgery for scopes and biopsies to see what her Lil 27 kilograms body does on it's own, when it fully rejects her stomach and intestines, Please pray for her.
Hannah at her IRP appt. August 23, 2011
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