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Luca was born on 2/8/22 with obstructed Supercardiac Tapvr at birth and was immediately transferred to CHOP for open heart surgery at 4 hours of life. Luca recovered for 3 weeks at CHOP and went home with no known issues. After two weeks of being at home, Luca presented with respiratory distress and was taken to the ER twice. This was followed by feeding intolerance. Luca was then intubated and sent to CICU with respiratory failure/Pulmonary Edema. Luca was extubated in following days and placed on high flow nasal cannula. Followed by reintubation a few days later for respiratory failure. CT/MRI/Bronch/Heart cath/lung biopsies were performed to diagnose. All showed some sort of rare interstitial lung disease but biopsy was inconclusive. Medical records were sent to Cincinnati and Boston hospital for review, but results were inconclusive. A medical conference with doctors across the country was also held to go over the results of the lung biopsy, and still were inconclusive. Luca was then presenting with respiratory distress while being intubated followed by high heart rates, fevers and high blood pressures. On other occasions, Luca presented himself with low blood pressures, high heart rates and good oxygen states. The eventual goal was to get Luca healthy enough to be put on a double lung transplant list, but due to his declining conditions, that was not possible.
Luca's fight ended peacefully on May 18th in the arms of his mother and father. Luca's parents are already dealing with losing a baby, so any donation that would go towards endless medical bills along with services for Luca would be a God send. Thank you all for all of your support.
Rest In Peace Luca Michael Johnson 2/8/22- 5/18/22
Organizer and beneficiary
Alexa Rodano
Beneficiary