Grace Johnson

Born via emergency c-section Nov., 16th, 2019 at 35 weeks, our Grace was not doing well, had difficulty breathing, tube tube-fed, and had low platelet levels. She had to be transferred to St. Coud hospita,l where we found out she had enterovirus- meningitis. It started to attack her heart and she started to code. She was then flown to U of M Masonic Children’s Hospital where she was put on ECMO for a week. She started to look a little better and handled extubation well, and then she declined again. 5 attempts of intubation, multiple blood transfusions, high drugs/medications to keep her calm it was clear she needed a heart transplant. So we agreed to have her on the Berlin/LVAD, and that only lasted one week before clotting, so a 2nd one was placed and the next day we got the call a heart was available. She was transplanted Jan. 24th, 2020 and THRIVED! Slowly weaned off a lot of major drugs/medications,s and a g-tube was placed and she was discharged March 2020. Within a month of discharge, she was admitted a lot over the next year for multiple infections such as recurring C-Diff, low blood sugars, Covid-19, ect. In 2023 she transitioned to Mayo Clinic in Rochester, MN as the heart transplant team at the U of M was not operating and we followed her amazing Transplant Doctor there. Since being at The Mayo there has been some instances of more smaller diseases, along with PTLD, which thankfully went away by a few rounds of Chemo and taking out her tonsils and adnoids. Her stomach has matured and so the cdiff has stayed away for a solid 3 years! In two weeks miss Grace will be 6 years old! She is in Kindergarden and thriving! Still having some issues with her mental state as she seems to be behind about a year… But overall, she is here and kicking life in the butt everyday!

She is the strongest little girl i know! Having a heart transplant at 2 months old!

-Amazing Grace