Kai’s 2nd open heart surgery

Hi, My name is Kai Santibanez. I am a happy, active, silly one year old. I love smiling, laughing, swinging, walking/running assisted, chasing bouncy balls all around my house, and anything to do with water.

 I was diagnosed with tetralogy of Fallot @ 22 weeks gestation. Tetralogy of fallot is a rare form of CHD (congenital heart defect), consisting of 4 congenital cardiac defects. I wasn’t supposed to have my “repair” surgery until I was 6 months old, but I had it at 3 weeks. This was because I had no oxygen to the left side of my heart which kept my total oxygen saturation in the 40s. All repairs are temporary because there is no cure or any explanation of what caused me to have this. The hope was that this repair would hold me until I was an adult size for a complete pulmonary valve replacement. Unfortunately, my parents learned that I now have an aneurysm on my heart along with transannular patch stenosis. The patch was supposed to help prevent the oxygen-rich blood and the oxygen-poor blood from mixing. However, due to the blood flow of the patch, it caused an aneurysm. The aneurysm is pretty large and is squishing my patch. My cardiologist says that this is rare that it happened. However, I will now go under open heart surgery to get the aneurysm removed & my patch repaired until I can get a replacement pulmonary valve. I will be undergoing a cardiac CT scan with anesthesia so my surgeon can see how to operate. My surgery will be in early June.

 Donations will be used to assist my parents with additional costs. Once I’m released from ICU, both of my parents will be switching out with family to sit with me in order to continue to work while I am in the hospital. These include food, gas, parking passes, hotel if they are unable to get a sleep pod while I’m in ICU, etc. We are grateful for anything. Word of prayer also goes a long way. Thank you everyone for supporting and loving me. My parents are also doing a t-shirt fundraiser for those that are interested. My mom will post updates as things come up and throughout my time at the hospital. My CT scan is scheduled for May 30th unless I can get in sooner.

T-shirt fundraiser ------> https://docs.google.com/forms/d/e/1FAIpQLSfXTUcjkc9zNZ0P0j2cMxfsaJCSYTWQ3U_KhkYiJ8ifGPNfHA/viewform?usp=sf_link