Two years ago we wheeled Addysons back to the operating room for her ileostomy surgery. This was a huge decision and definitely the hardest one we have ever had to make. She didn’t get a lot of time to process the decision but her entire team felt it was for the best and it was. It kept her from needing clean outs all the time. It kept her out of the hospital for bowel related issues and She adjusted to her new normal.
Now here we are two years later looking at all the ups and downs. She was still in the hospital a lot but not for gi stuff now it was for tachycardia and bp issues. She required lots of clinic appointments and testing to figure out why she was having so many issues post surgery. Come to find out she has automatic dysfunction and mito so it made things more difficult. Autonomic Dysfunction is when your nerves are damaged and cannot communicate with your organs properly to control things like bp, hr, breathing, etc.
She has since needed a feeding tube. We had an NG than an nj then back to an NG and now a G. This was not in the original plan but has proven to be vital in her care.
We have traveled states for her care. From Maryland to Boston to Philadelphia to Georgia. Girl we will travel anywhere to get you the team you need.
Luckily we have found a great cardiologist and a dr who really understands dysautonomia. Her gi is super knowledgeable and she has had two great surgeons on her team. She has not been admitted to the hospital since June!!!! We have made it 8 months. This is huge. She hasn’t made it this long since she was 4.
Addyson has gone from her stomach always being distended
It’s been a rough two years but For two years Addysons has worn her bag and continued to live her best life. She has not let it stop her from: tumbling, cheer, softball, swimming, surfing, skiing etc. she just keeps moving forward.
It’s taken 5 hard years of lots of tough discussions with her team, lots tests, surgeries, invasive procedures, therapy and clinic visits to reach a stable point. To reach a point where we feel ok. To reach a point where we aren’t waiting for one thing to happen and land us in the er.
We are very proud of her and we are thankful for our family and friends who let us lean on them. Who support us. Who let us vent and provide guidance and recommendations. We love you all.
And feb 28th is rare disease day so please spread awareness