Warrior Wednesday

Sage, 15mths old

VSD, COA HCm, CKD

“My son Sage was born 11-30-22 at 37 weeks because I had preeclampsia. We thought everything was fine until the hospital realized he wasn’t getting enough oxygen. They were hoping it was his lungs and a shot would help but, unfortunately it was his heart and they had to emergency transport him to our local Childrens hospital. Upon arrival, his heart was too weak to repair. They put him on medication and other support to get his heart healthy enough for surgery. At one week old, the medication failed and they operated asap. Sage had many complications and started to bleed out during the surgery. They managed the bleeding enough to finish surgery but he quickly crashed again. They did an emergency echo in his room and found coarctation of the aorta had come back (almost as bad as it was before). They discovered a large blood clot in his heart. His primary team argued with surgeons about if he could wait to go under the knife …. or if they had to risk it all and put him back under right away. The surgeon explained that he wouldn’t survive the night if he did NOT have another open heart. Not even two hours after his first open heart surgery, Sage went under for his second. He had some bleeding with this one as well. He was on a breathing tube and his kidneys had completely shut down. They had to put him on a form of dialysis that required a line in his neck and a constant flow of blood to be removed and put back into his body. After 30+ days of dialysis and coming off the breathing tube, we finally got to bring Sage home for the first time. Unfortunately that didn’t last long. A little less than a month after being home, he had to be admitted again because the coarctation (narrowing in the aortic arch) came back. As of now, we were talking extreme intervention. Sage has severe cardiac and kidney complications …. We are in contact with his surgeon about a study that I cannot yet share details on. We appreciate every person who follows our story and shows us love while we navigate the complex life of Sage.”

Charging the Storm

He is always smiling and so happy no matter what’s being done to him or how sick he is

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