December 3, 2014: TCH Visit

We flew to Texas late Tuesday night. Stockton and I flew together as Seth flew earlier to get some work done. We started our appointment in the ECHO lab. At the age of 3 the lab no longer requires sedation. I believe we have had sedation twice for his ECHO due to the fact that he wouldn't sit still. All the other times we have been fortunate to avoid it. My little boy is so strong and just laid in the hospital bed like such a big boy. We watched Monster's Inc. and he wanted pictures on his iPad. The ECHO only took about 20 minutes then we headed to the waiting room for our cardiology visit with Dr. Ocampo. Ocampo's office was able to squeeze us in about 45 minutes early. We were thrilled because we have been at TCH sometimes 6 hours just waiting for all of our appointments. Immediately, Stockton had his EKG and we did 4 blood pressures. (Both arms and both legs) Ocampo came in and gave Stockton a hi five. She immediately noticed the coloring in his finger tips. They have always been a purple color but this time she noticed slight clubbing in his hands. I can actually see it in his toes as well. Without getting us too alarmed she stated that his ECHO and EKG looked great. His normal oxygen saturations are 85/86 and he is still retaining that. However, she thinks his body is making too many red blood cells from the lack of oxygen he receives so he will be a candidate for surgery next summer. We scheduled a heart Cath in March 2015. This test will allow them to have a better look at his heart before having open heart surgery. It will test pressures and see how urgent the next surgery might be. We have to schedule a visit with our surgeon, Dr. McKenzie after the cath is done. We will have surgery June, July or August. (Crossing our fingers for a summer date.) All of these dates are only scheduled tentatively.  Stocky was taken off Enalapril and we raised his dose of Aspirin to 81mg. He will only be taking that now! Hurray! After taking medications up to 8 times a day we are only left with taking Aspirin once a day! Stockton had a Holter monitor on when we flew home and we sent that back yesterday. We are nervous but yet anxious to have this next surgery. We go through so many emotions when Stockton is scheduled. I hate seeing him so vulnerable and I wish I could fix it. I don't think I will ever come to terms with his condition. It is a constant inner battle his Dad and I go through. Stockton is such a warrior. I am blessed to have him in my life and so many of yours. Please continue to pray for him and that the doctors have some guidance in the direction they will take. We are grateful  for all of you and the help we receive with our other children.