A Lil' Boy's Journey to Live….

Update .. Heard from Dr Ryan (GI) and spoke to Dr Piccoli (GI) and Dr Goldfarb this week. GI docs are in agreement that Riley’s impedance probe and biopsy results looked pretty good. There was some minor inflammation in the esophagus and the probe showed some reflux. It was pretty minimal time over the 24 hour period. So the Thal is doing it’s job. We are going to add back a reflux med in the continuing effort to protect Riley’s lungs.
Dr Goldfarb said Riley’s BAL (lavage done during Bronchoscopy) was improved some since March. This is most likely because Riley isn’t drinking and therefore isn’t aspirating as much. There is still some cellular evidence of aspirating/refluxing but hopefully adding the reflux med and with Riley still not drinking that will continue to improve.
Riley has several appts coming up in September including plastic surgery, bone health, orthopedics and pulmonary. In October Riley will be admitted to CHOP for his next round of Zometa (bone infusion therapy). During that admission Riley will have the MRI to check for Chiari malformation.
Until then .. Riley is excited to be back in school and in the 5th grade!!

#CHD #Heterotaxy #Transplant #Warrior #BeatingtheOdds Everyday. ❤♻️💙

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