Not so routine

February 25, 2009 was a routine appointment, Anthony's echo cardiogram, well routine for us since having a baby with heart issues. Once your child has been diagnosed with a heart condition, echo cardiograms are routinely done every 3 months to annually, if the heart appears to be very well the echo maybe done every two years. Since Anthony's heart was doing very well our Doctor allowed us to go 2 years, which was a huge celebration for us.

So Anthony and I make our way up to Sacred Heart Children's hospital to have his Echo done. We get to the hospital, make our journey through the parking garage to find the closet Accessible parking (for Anthony's use), we take the elevators to the 4th floor and check in with the receptionist. Anthony loves the toys in the waiting room which often presents a challenge for him to leave the waiting area and go to the exam room. The nurse and I attempt an EKG (Electrocardiography) but as soon as put the plastic sticky strips on Anthony goes into defense mode, he refuses to partake in this and makes sure the electrodes do not stay on his skin at all, so we surrender to not tick him off as we want him to cooperate for the Echo. Not only do we skip the EKG, but I take it to the next level, yep, I bribe Anthony with a cookie from Starbucks (really for me, a nice cup of coffee). The bribery works along with a movie that played during the Echo.

Well what appeared to be routine for us wasn't. Typically, the Doctor shows us the scar on Anthony's aorta from his heart surgery done at 4 days old, we see he has a bicuspid valve (should be tri, 3 instead of 2 like Anthony's) we see the beautiful blood flow he didn't have before heart surgery, we typically see a heart that is healthy and amazing! So, this day appeared no different then the last few Echos we had done. It was typical till the Doctor told me that Anthony's aorta is widening. What! I ask if we should be concerned? She explained to me that as the aorta widens the walls thin putting Anthony at risk for a rupture of his Aorta! Oh that is concerning! I asked her to explain it to me again, she said it's the same defect that John Ritter had and we all know what happen to him! My heart sank and I didn't know what to ask or say. The doctor went on to tell me she will keep a close eye on Anthony, that the change is generally a slow change and the difference for Anthony to John Ritter is that we know Anthony has this defect. So we will return to the our routine of Echos every 6 months to watch what his aorta is doing. Anthony's activity level can remain the same for now, but he should not be allowed to strain himself. If his aorta widens then we will have to really restrict his activity and then explore what our options will be. I hope and pray that his aorta doesn't widen any more, I pray that my son will not be facing another big open heart surgery, I pray that my son's heart will remind healthy for the rest of his life. I have faith that God will keep Anthony safe and I as his mom have to trust in whatever God's plan is. Other then the aorta, Anthony's heart is healthy and doing what it's suppose to do.

While we sit, wait and watch Anthony's heart we have a plan of action in place at school. If Anthony appears to be in a lot of pain (which I was told would be the worse pain) the school is to call 911, then the school nurse and us. He is to be raced directly to Sacred Heart with everyone knowing Anthony has an Aortic Dissection, paramedics are to call his cardio doc in route to the hospital. The school has been given strict orders to call 911 and they have agreed to stick to the plan. We all agree we would much whether have 20 false alarms then to miss the chance of Anthony surviving.

Since Anthony's new heart diagnoses, I have decided that we have been reminded that life is short and none of us know what our time here is. I have always wanted Anthony to participate in any activities that he would typically be part of, so I signed Anthony up for Little League Challenger baseball. Yahoo.......Anthony will be playing baseball this year! He will be given a real uniform, be able to learn catching and throwing skills and his favorite, to hit a ball off a tee! This league is for children who have special needs due to health issues or disabilities, so no pressure to work towards an all-star team, just play and have a great time. Once we've started I will be very happy to share how Anthony is doing and I will be very excited to share photos of my little star. I can hardly wait!

Otherwise, Anthony is well. He is keeping his teachers busy. Anthony has a mind of his own and has no problem testing authority, which is a good thing, but we still have to make sure he does what he is suppose to. We celebrate on the inside that Anthony is his own person and will not be easily controlled by others. We love that Anthony is independent and will allows nurture that quality while teaching Anthony that limits are good.

We ask that each of you will say a prayer for Anthony or hold a good thought for him. We will keep you all updated. Take care!