Congential Heart Defects

I have some followers that may or may not know about a few things. Tucker was born with major heart defects. We have never really became involved with the Congenital Heart Defects foundation but have wanted to. Down Syndrome really is the LEAST of our worries with Tucker. His heart someday will give out. He was born with hypoplastic left heart, which means his left side of his heart did not grow into what it should have. The left side of our heart is "the steam engine" as it was put to us. The right side is the "lazy side" pushing blood to the lungs (the path of least resistance). The left side provides and circulates the blood throughout the body....therefore needing a lot of squeeze to get it there. Since Tuckers left side did not grow like it was supposed to, the right side now has to do all the work.....which in time will cause his little heart to give out. He has had two surgeries so far to correct the problem, the 3rd and final wont be for another year or more. This is why Tucker is so blue, or purple at times. His oxygen level in his blood runs about 70-80, unlike "typical" children who run 100%. When this final surgery is done, Tuck will be in the 90's but never 100%. The heart defect is also the reason we have to take extra care in protecting him from illness, the reason we freak out when he is sleeping a little to quietly. When he gets sick it takes so much longer to heal, along with low muscle tone, floppy airways and not enough oxygen.....it really takes a toll on his little heart. One day, if he qualifies, he will probably need a heart transplant. When? Who knows. Tucker could live to be 80 years old or his heart could last 2 years or 2 months. This weighs on our hearts very heavy. This is a part of Tucker people don't see.....this smiling, tug at your heart boy, giving kisses and hugs has a bad heart. You would never know that as much love as he gives. (just a little reality check)
Tomorrow we have our cardiologist visit with Dr. Kaine. Probably an echo cardiogram and EKG. Then we go to endocrine for a visit also. Half a day at Mercy..but I much rather have it all in one day then going more than once.
I would like to get a team together for the Heart walk this year. It is in June. I had Tucker's name added to the shirt this year, just by chance I came across the information to have it done. I guess they have a list of names on the back of the shirt of heart kiddos. They want to fill it up with names this year. We do a team for the Downs Syndrome walk each year to help raise money-the Guild has done so much for our family for the Downs community! LOVE THEM. I am sure this organization does the same. Most importantly it gets families together that are going through the same things to discuss what works and our kids. I love to talk about Tucker and what he does each day and what he accomplishes....not that I don't love all my children. Tucker just amazes me each day, with all the issues he was born with......yet he rises to the occasion every single day.