Monday, August 30, 2010

July 26

email to a friend - who is also a pulmonologist -  July 26....

Glenn and I wanted to write to you to tell you about Sophia.  We began to notice in late March and early April that she was not returning to her "normal" health in between respiratory illnesses.  She was sick all winter - and on antibiotics and Orapred every month from November through May of this year.  After noticing other physical symptoms which puzzled and concerned me, I took her to her pediatrician and talked with him about her.  At the time, she was sick with yet another respiratory infection and needed antibiotics and steroids again.  She hadn't been to Peds Pulmonology for 6-8 months.  The ped. felt that she was struggling and told me to take her to Dr. Sufi.  After seeing her in late May, he ordered CT-scan and chest x-ray which showed that she was having twisting of her airway again.  This morning, he and Dr. Abraham performed a bronchoscopy on her.  They found several things - first that her tonsils and adenoids are extremely large, blood vessels in her airway show symptoms of an asthmatic, she has a nodule on one of her vocal chords, and some little bumps in her airway that are typically present in patients with reflux or allergies.  She is having collapsing at her pharynx and he said bronchomalacia is present as well.  But the most concerning thing is that the opening into her lung is a slit.  He is contacting Dr. Hamaker about a tonsillectomy to give immediate help, and then once she has recovered, he and Dr. Abraham are each to see her - about 3 weeks after that procedure.  He feels Dr. Abraham needs to replace the implant with something bigger, and that it will hopefully widen the opening.  But he isn't sure it will be enough.  He says that since not many physicians have experience with Post-Pneumonectomy Syndrome, he wants to bring as many experts on board as possible, so he will most likely send us to Cincinnati.  He says stents haven't been successful in children, so we may need to try something experimental.

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