We still can’t really wrap our heads around the fact that our super happy, funny, strong, extra smiley and loving 7-month old baby just had open heart surgery (OHS). It is mind boggling that surgeons are able to operate on such a small child. At Boston Childrens there are over 30 rooms in the CICU, and from what we can see, nearly every room houses a child that just had some type of major, invasive heart surgery or a heart transplant. Kaden’s doctors equated their cardiology department to the airlines, this is just what they do. Airlines fly. BCH does heart surgeries. They do 5x more major heart surgeries on babies and children then anywhere else in the world. They are the best, and we couldn’t be more grateful the Lord has led us to this hospital and team of doctors.
Kaden is stable. He made it through a 9.5 hour operation. Praise God!
The surgery itself was clearly long and treacherous. The repair of Kaden’s valves were more difficult than they had imagined. The surgeons first made the incision, going through his sternum to reach his heart. A small incision in the left atrium allowed them to reach his mitral valve and the left ventricle. The initial defect, we understood, was with the aortic valve, but once they were inside his heart, they could see why the pressures in his heart and lungs were so high. If you can, picture a circle that represents the mitral valve… Then inside that, picture two half circles flipped upside down (so the rounded edges touch). These represent the two leaflets. These should be connected with muscle and chords to create a normal functioning valve. With Kaden, his valve looked like a little pacman (yes, mom terms). Half of the valve was completely closed and the other part (pacman’s mouth) had been torn during his last catherization, creating leakage. Dr. Emani had to cut through the connected tissue to open the leaflets, as well as recreate tissue, and then reinforce tissue to stop the leakage. This all in a valve the size of a penny.
After the first repair, the reinforcement wasn’t enough. Dr. Emani had to go back in a second time to add additional tissue. It wasn’t until the end of the day, they made the final call not to replace the valve. This kept us on pins and needles for a good portion of the day. Although they are having a lot of success with melody valves, the first one was placed just over four years ago… So there just isn’t a lot of data to support longevity and function. Also with his size, the melody valve would certainly have to be replaced in a few years as he would soon outgrow it. At this point, there is a 10-15% chance that his valve will still need replaced in the next 30 days. Hopefully, this repair will last as long as possible. The potential is 4-5 years, and although that does mean another OHS, the benefits of keeping his own tissue at this point outweigh the benefits of having a fully functioning valve. Please specifically pray for stability & normal function, for healing of his mitral valve.
They didn’t need to do any work on the aortic valve. Miracle! It looked pretty good. They were able to remove scar tissue from this valve and the left ventricle, and this required another incision in the aorta to access this part of the heart.
Today, Kaden is on a ventilator, and the expectations are to remain that way for about a week. He is on paralytics, lots of sedation, and muscle relaxers so that his body can slowly heal. Hopefully by Friday, he will be ready to begin waking up. These next days are the most critical. We have been told this week’s road to recovery will be the most difficult part. Friends, we can’t wait to hold him and see that infamous smile.
I do not think I am able to describe the emotions we experienced yesterday. At the core though, sits gratitude for our Lord and Savior. We couldn’t have made it to this point on our own will and certainly not on our own understanding. We couldn’t have made it to this point without our incredible support system constantly praying, messaging, and reminding us where we need to keep our focus. One of the most memorable parts of the day was seeing how many people publically supported Kaden with the ❤️K❤️ on their hands. My sister-in-law in Chicago took her daughter to the doctor yesterday, only for the nurse to recognize the K on Lila’s hand. She knew that was for Baby Kaden and had been following his story on Facebook!! Amazing!!!! We are reaching people, you matter!!! Thank you for being a part of our journey. We are so blessed.
Post Op Day One… We will continue to walk purposefully. Will you walk with us? We are praying for immaculate healing and the quick reunification of our family.
With Love & Gratitude,
Nate & Erica