Ellie Rae Steltz Digeorge and Truncus Arteriosus

Ellie’s surgery was on March 30th. It went great, better than expected and she was in recovery quickly thereafter. She was doing great until the evening of March 31st when she coded and had an arrest. She was resuscitated and placed on ECMO while her heart recovered. She spent 4 days on ECMO and then battled with pneumonia, respiratory treatments, paralyzed diaphragm, mucous plugs, infections, blood clots, EEG, EKG, x-rays, ultrasounds, blood work, weaning off drugs, respiratory support, tense muscles, PTSD and feeding difficulties. Ellie ilwas at Vanderbilt children’s PCICU for 30 days, and she is finally home now. We are working on positive touch all the time with snuggles, kisses and massage to counteract all the negative touch she’s received in the hospital. After a long 30 days at the hospital dealing with Covid-19 and all of the challenges of not being able to be together, we are elated and can’t control our emotions to finally have our family together and to bring our sweet girl home.