Warrior Wednesday

Emmett, 2yrs old

Tricuspid Atresia Stenosis, VSD, ASD, Severe Heart Failure, LVAD, Transplant

My son was born September of 2021 and was late diagnosed in November 2021. He has always struggled due to ftt and early onset heart failure post Glenn. Emmett had his Glenn in august 2022 and was diagnosed with severe heart failure shortly after in March of 2023. We battled heart failure at home until August 2023 when we were notified Emmett’s heart failure has just gotten too bad and we would have to be admitted at musc status 1A until transplant. At this point we were terrified, transplant had been mentioned in March but it was a distant memory because we thought things were getting better but boy were we wrong. The transplant diagnosis was just the beginning of a long list of problems we would face. Emmett ended up getting in icu for 3 months of his 5 month at musc (currently still admitted). He declined so fast we thought we would lose him multiple times, he declined so much he needed to be placed on Lvad in November and things finally started to get better and he was stabilizing! We were finally transferred to stepdown! We stayed in step down for 5 weeks until December 28th when we got the call! Emmett had a heart and it was a perfect match! Emmett received his heart on December 29th and let me tell you every. Single. Second. Of those struggles were worth it to hear the doctors say he is one of the best transplant outcomes they have ever seen! Emmett is now three months post-transplant and is doing amazing! He has had three biopsies done and they all showed 0r and his heart function looks as if it was his own! He’s off most of his transplant meds expect 5-7 morning and night.