Kimberly's Journal

Aidan had his 2 week post-op check up last Thursday and his Doctor said that he is doing really well! He told Aidan that he could go back to school in another week. (Really that is more because of trying to protect his chest from possible accidental injury because there are over 400 kids in his school and so sometimes it's a bit crowded at various times of the day.) Aidan was so bored though, that he almost begged us to let him go to school today, so - today was Aidan's first day of Third Grade! He made it thru the entire day, which is great - but it did tire him out quite a bit. We also got the good news that he only needs blood draws once a week now, it seems they are getting his coumadin levels and dosage figured out. He is really really happy to only have to go do that once per week! Hope everyone is having a terrific week -- TGIF (soon)!

Well, post-op day seven and the doctors finally released Aidan so that he could go home! Aidan (and all of us) were so happy to hear that we could finally get home. We came home yesterday (Tuesday), and Aidan had his first blood draw this morning to check his INR levels for his Coumadin. He is walking a little more each day, and today, he even went to school to meet his teacher for third grade. Even though he'll miss the first two weeks of school, and it was a LOT of walking for him, it was good for him to see some of his friends, see his new classroom, and meet his teacher. A little stronger each day and he'll be back to his old self, but able to participate more in his favorite game - dodge ball!

Aidan's surgery was exactly 1 week ago today. We decided to go with a St. Jude's Mechanical valve in his Aortic valve. Surgery was one week ago, and Aidan is doing great. We've had a few bumps this past week, with fluid around his left lung causing it to collapse on the bottom portion. He's been moving around, coughing well, using his spirometer and getting rid of the excess fluid. His chest tube, central line and ART line are all out. We are are still on the heparin trying to figure out his dosage (and stabilize) for his Coumadin. He has been up and out of bed walking around the past three days and is extremeley bored. We are crossing our fingers that we'll be able to head home tomorrow.

This is our journey. We share it with our son. We were blessed to have twin boys in 2006. Our younger twin (referred to by our doctors as baby B), was taken immediately to the NICU, due to fluid in his lungs. While there, they discovered that he has Aortic Stenosis. Total shock. I had difficulty understanding how my beautiful little baby could be anything but perfect. With just having given birth via C-section to 2 babies, and then hearing and trying to understand this news, it was overwhelming. At 8 wks old, our son had a balloon catherization, because his valve had begun to close up. He is now almost 9 years old. He's had yearly check-ups with his Cardiologist and has been doing well. This last year, we've noticed a change. In addition to several boughts of bronchitis through the cold/flu season, he also had strep twice. He's been having more difficulty keeping up with kids doing any sort of aeorbic activity, tires out much quicker than he did before. Yesterday, at his annual check-up appointment, we learned that his valve has become worse, and he needs to have heart catherization on Monday, and then will need surgery to replace his aortic valve. We are at this point thinking that we will opt for the Ross procedure. We have several questions for the cardiologist and have been writing them down. One big question is, what is the recouperation time? Is it open heart surgery?