Carter was born in St. Louis on 4/23/24 with a very complex heart. He had Dextrocardia, VSD, ASD, DORV, CCTGA, and Hypoplastic aortic arch. He had his first surgery at 8 days old, and came home two weeks later. He grew tremendously and was meeting all milestones. Towards a year old, his oxygen saturations dropped significantly. He had surgery planned many times but kept delaying it due to sickness. The last delay caused him to come home on oxygen for a month. After not receiving a promising surgery outlook in St. Louis, we sought out second opinions and ended up choosing CS Mott in Ann Arbor, MI. This is 7 hours from home. We were told we’d be here 10-14 days. He had surgery on May 27th. The surgery did not go as planned, and he was not able to have a double switch. This caused further complications. He was in complete heart block. Six days later he went back to the operating room and got a permanent pacemaker. This too changed the geometry of his heart and caused his mitral valve to have severe regurgitation, a new problem. He was extubated 4 days after pacemaker surgery, but he was struggling breathing wise. Three days later he was emergently reintubated because he vagaled. They did a CT scan and thought it was possibly pneumonia. He was extubated 5 days later. He was doing really well after that. He was mainly just struggling with sedation weans that caused vomiting, tremors, high heart rates, and agitation. We brought the increased heart rate and increased blood pressure concerns up for days and nothing happened. On Sunday July 29, we gave him an evening bath and had just videoed with his 3 year old brother at home. Fifteen minutes later we suctioned him. His eyes rolled to the back of his head and went into code. They performed CPR for 2 hours before placing him on ECMO. 5 days later he came off ECMO. We were again planning mitral valve surgery. He had that on July 9th. They tried to repair it 4 times. They ended up replacing the valve but then had to redo the replacement again which meant more clamp time. After this, he did well but his left ventricle function was severely diminished. We got him to a good spot and even started weaning the ventilator. Suddenly, he hit a wall and had chest retractions. His temp increased and no blood tests came back positive. Thursday morning, he couldn’t hold his blood pressure and was close to going on ECMO. He was in septic shock. He recovered and was stable that day. Friday, I came in and noticed his feet were completely purple-it was not this way 7 hours before. I immediately asked for the attending. She was very concerned. He ended up having DIC. This is a clotting disorder in response to sepsis. We went to CT Monday and found bleeding in his brain, but also clots all over his body…despite being on heparin for the valve. That afternoon, they did an echo and found a clot in his baffle and mitral valve which caused his valve to malfunction. We were told that we couldn’t have surgery now because it was a 0% survival rate due to his clotting issues. However, if we leave it, he’ll also die. They recommended optimizing the heparin and hoping for the best. We repeated the echo Wednesday and it was worse. They determined we had to do surgery for even the slightest survival chance. He is having surgery Thursday July 31st. They said he’d almost certainly come back on ECMO. In addition, they had done a bronchoscopy the week before and found an airway issue. This could mean that he would need a trach in order to breathe if he can’t come off the ventilator.