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On August 24, Scarlett was extubated to CPAP for the first time, and we were thrilled by her progress. But just a few days later, Scarlett’s condition took a turn for the worse. She began retaining CO2 and had to be reintubated. It was a setback, but we had seen her fight before, and we knew she could do it again.
By this point, Scarlett had never had food in her stomach. She had been receiving all of her nutrition through IV TPN. The doctors decided to place a feeding tube in her nose so she could begin receiving breast milk. Unfortunately, she couldn’t tolerate even the smallest amount of food. After discussions with Dr. Kays, it was decided that Scarlett would need a G-tube, along with a Nissen fundoplication to prevent reflux. On September 28, Scarlett had her G-tube surgery, and things began to improve. But shortly afterward, we noticed swelling in her face and neck, which was eventually diagnosed as stenosis of her superior vena cava, a complication from her time on ECMO.
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