Hello Friends and Family. We wanted to share an update of Amelia's journey. A long story short about Amelia is she was born with severe heart problems. The valves in her heart did not grow right causing the deformations to affect her function. She lived at the hospital until at 52 days old she had her first open heart surgery to repair a hole in between her upper chambers as well as repair her pulmonary valve, tricuspid valve, and examine her aortic valve. She recovered well. This last summer she went back to the hospital for an angioplasty to balloon open her aortic valve to allow more blood flow to the body. This went well and they anticipated it to last a long time. Unfortunately it only lasted until Christmas this year. We came in for another ballooning the day after Christmas only to find out mid procedure that they couldn't do it and that she needed emergency open heart surgery the next day. The following day we had a long day of waiting while she had to have a full aortic valve replacement at 17 months old. Surgery seemed to go good and heart function is improving. After surgery she had an issue with the IV in her neck where all the meds were going. The meds ended up going into the tissue instead of the vein. These meds killed her skin, tissue, muscles, and other small veins on the whole right side of her neck from ear to chin. The surgeons thought it would be a pretty standard healing process with minimal damage, but here I am today after 2 trips to the OR in a week to remove dead tissue from her neck wound with no real end in sight. They said there is so much more damage than they could see from the first 2 surgeries. Now we are getting into a dangerous place because now there isn't much tissue left to protect important nerves, veins, and what muscles haven't been damaged. We will be living at the hospital or at least near the hospital until they can get this healed and taken care of. She has almost spent half of her life at the hospital and her life has just begun.
Thank you for taking the time to listen to her story. We do not expect anything more than keeping this little girl in your thoughts and prayers.