The Mayo Clinic exceeded our expectations. Brooklyn refers to it as the DisneyWorld of healthcare. Not only are the facilities top-of-the-line, but the staff (everyone from the nurses to the receptionists to the doctors to those performing the tests) have been terrific. Within the 1st hour, the diagnosing adolescent specialist concluded that Brooklyn likely has Autonomic Dysfunction -- an autoimmune issue in which the part of your nervous system that regulates blood flow, body temperature, breathing, and digestion is out of balance. She has nearly every symptom. How amazing that none of the 30 doctors that weve seen in the last 20 months has ever suggested this. Thursday was a day of tests to confirm this diagnosis. Brooklyn was a champion - especially with a horrific test that measured 13 things, including the oxygen and blood levels that go to the heart muscle, lung capacity, and oxygen uptake. She was close to fainting at several points because something with her levels didnt match. This morning, we met with 2 nurses who explained strategies for pain management specific to her. They gave terrific advice and a specific plan with the goal of getting her back into school in the fall. This afternoon was our final appointment with the adolescent specialist, Dr. Amie Jones. Heres the official diagnosis: 1. Her iron (specifically feratin) level is VERY low. Its at 7 and should be at 50 for her age. She is having an iron infusion tomorrow morning at the hospital. Takes about 2 hours. 2. Her muscles are severely de-conditioned from being so limited due to her head pain. So HOPEFULLY her joint pain is from that and will improve as she slowly builds up her muscle tone again. 3. She has symptoms of Autonomic Dysfunction - but we will pray that this isnt actually the case. In the meantime, we will follow the regiment for patients with this condition. Brooklyn is pretty overwhelmed at the moment. Shes been taken off a few meds. Heres what shes thankful for: 1. Despite the infusions, my kidneys, liver, heart and lungs are doing great. 2. Love the devoted team at Mayo - their #1 priority is the patients needs. 3. Enjoyed the time with my parents - of course my dad made it an adventurous week! We prayed together before each appt and test; it was a special time for us. So thankful for the encouragement you all have provided to us along the way. We know theres still a long road ahead, and were trusting Gods faithfulness will get her through this restoration process. Tim and Tracee
Posted on: Sat, 19 Jul 2014 04:37:33 +0000
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