Aiden's new heart. Tiny but Mighty!

Aiden’s New Heart Journey “Tiny but Mighty”

This GoFundMe account is sponsored by Aiden’s family. Kailie struggled with putting this out there as everyone was so generous during Aiden’s first surgery and she doesn’t want to burden anyone. Kailie and Dakota need your help. For those of you that know Kailie and Dakota, they would do anything for their family, extended family, and friends. Kailie has the biggest heart of gold and wants the best for everyone. Dakota is hardworking and does everything he needs to do to support them as best he can.

For those that have not heard his story; here it goes. Aiden’s journey began before being born. He was diagnosed in utero with a rare heart defect. Instead of using big words and terminology that most would not understand. His heart was missing many parts. Kailie and Dakota were told that immediately after birth Aiden would need open heart surgery, again at 6 months, and then again around the age of 5. If any one of these surgeries did not work, he would need a heart transplant. Aiden had his first surgery at 2 weeks old. This surgery enabled Aiden to grow and get stronger for his second open heart surgery at 6 months. On January 4th of this year, Aiden was admitted to Mayo hospital for his 2nd open heart surgery. The length of stay for this surgery was 2 weeks and then he would go home to finish his recovery. The surgery on his heart went as planned, but his heart was very tired. Aiden came out of the surgery on an ECMO machine. This is a heart-lung bypass machine and did the work for his heart and lungs. The original plan was to keep him on this for a few days to give his heart and new parts some rest. Aiden was able to come off the machine, however, his heart and lungs couldn’t function on their own. Aiden remained on a ventilator. While on the ventilator he developed a temperature and his lungs started filling with fluid. It was found that Aiden had contracted two different types of Pneumonia. Pneumonia is always something that can happen after major heart surgery. It was also found that his diaphragm was not working properly. Aiden had another surgery to fix his diaphragm. The surgery was successful; however, his lungs were still filling with fluid. Aiden remained on antibiotics and his x-rays were looking better. Every time the doctors started to turn the vent down, he would struggle. It was also found that Aiden’s heart was not as strong as it was when he came out of surgery.

On Thursday, Feb 2, 2023, the doctors told Kailie that Aiden will need a heart transplant. The Dr. s as of this date are hoping that Aiden can come off the ventilator in 7 days, and if his heart will not handle it, they will put a tracheotomy in so Aiden can start to do what babies do. This will enable Kailie to hold him, he can sit up, start to do baby milestones, and eat solid foods.

This is devastating news. Kailie and Dakota now have hard decisions to make. Aiden will be at the Mayo hospital for up to a year. Once the transplant is completed, Aiden will be sent home with 15 medications a day for the first month. After that, he will be on at least 4-5 medications a day for the rest of his life. He will need one, maybe even two more heart transplants throughout his life. Heart transplants are roughly good for 20-25 years. This all depends on the person.

This is not what they were expecting, even knowing it may happen, no one can prepare for staying in the hospital for up to a year. This family needs your help with Aiden's ongoing medical expenses and in and out-of-home care expenses when he is released from the hospital. If you cannot donate, share this with other heart families, your friends, and families. The power of social media is amazing and this amazing family needs our support. Even $1 will help. If you would prefer to donate directly to Kailie and Dakota, you can do so via Venmo, @kailie-bride or PayPal @DakotaDemarrias.