7/28/18 - The Answer
I had my big blue eyes popped open to see my Mommy walk into my room this morning. She was all smiles to see that I had my hair washed. I've been kind of a stinky kid the last week. There isn't much area to clean with all the bandages and stuff. My girlfriend this weekend is the best, though! She always gets me all spiffed up and handsome. I like feeling clean. Mom thought I was absolutely adorable. I played with my fishes again. Mom told me there is a turtle, an octopus, a crab and a clown fish in my aquarium. The turtle is my favorite right now. He goes up and down with the water and lights. It makes me want to just reach out and grab him! I like this toy a lot. The music makes me happy too. I've always loved me a good tune to listen to! I sat up in my Boppy pillow and visited with Mom all morning, just doing this together. I'd give her lots of smiles so she knew that I was happy to see her. I think today I feel much better and am starting to really mean it when I smile, again. That is a nice feeling. Being happy is a nice feeling.
After Mom left my room, to head back home to go to my golf benefit, she ran into my doctor in the hallway. The doctor told Mom that she has big news! My old heart went to be tested after they removed it from my chest and she said that the testing came back with some big news for my health. I finally, after 156 days, have a diagnosis...a very rare thing called Coronary Ostial Stenosis (narrowing of the ostium part of the coronary arteries). This basically means that the coronary arteries in my heart were kind-of flat/pinched off when I was born and that would mean that my heart wasn't getting enough blood. So, it explains A LOT! If you've been following my story since the beginning, you'd know that I wasn't a cardiomyopathy baby from birth. That is quite unusual and didn't make since. I was born with something called heart block. Well, actually, I was born and was just fine for a bout 20-30 minutes..if we had know about my arteries' condition, I may have been able to have had stents inserted in my arteries to open them up so things could function correctly, thus preventing the damage to my heart (my old heart had lots of scarring from damage...). Maybe, if we'd known, my heart would be okay now and I'd have had just that repair surgery in the beginning and be home already? We don't know, but not knowing that there was a problem is what caused all of this. We will learn more as the week goes on and we can talk to more of my doctors on Monday. This was disappointing (as we may have had a chance to prevent a transplant) but also very good news, because we got an answer we never dreamed of getting. I can't believe it. Wow.
After Mom left, she went home to the Christmas Mountain Golf Course that is just down the road from where my home is. Dad was there getting ready for my "A Heart For Heath" Golf Outing. I wish so badly that I could have been there! Next time, for sure! Mom said she'd let me know all about it tomorrow, so I'll make sure to share with you how it went. She did put pictures up from the outing onto my Facebook page if you want to look. I have so many wonderful people in my life that I never knew cared as much as they do. It's so nice to have a big "family" surrounding me when I need them the most. Everyone who loves me, supports me, prays for me and cares about me...you're all so special to my "heart" and I will make you all very proud someday. This experience will make a great man of me, Mom and Dad tell me all the time. I have a lot of thank you hugs to give out when I am better! I hope you're ready! He, he, he! Good Night! -Heath