Having a chronically ill child is one of the most difficult things that you could imagine. Carla being born with half a heart threw our family into a whole new way of life. But, dealing with the fact that she had to have three surgeries and then would be able to live a somewhat normal existence gave us a ray of hope for the first 2 years of her life. After her Fontan though, the final surgery, the constant coughing, and coughing, and coughing started. And we are not talking a little bit. I would put her to bed at night and then listen to her cough almost continually all night long. Many times she would be throwing up phlegm and just plain miserable. This went on for at least 3 nights a week for a year and a half before she was finally diagnosed with plastic bronchitis. It went on for over a year before she even started coughing up the casts, but even after she was coughing out casts it took 3 months to get her diagnosed. And, that whole time we were wracking our brains, just trying to figure out what was wrong with her! Was she allergic to something in the house, was it a new medicine, was it pollen, was it laundry soap, was it her heart? We were told that it was not her heart and that it was asthma. But that answer was never satisfactory to me and her quality of life was horrendous. But, after she was diagnosed with the plastic bronchitis, the idea of giving her a heart transplant to cure the problem seemed so extreme!
Being on this side of transplant has made all the difference in our life. When my child gets sick, I don't have to worry she is doing to die... That is huge. I don't have to hook her up to a vest treatment 3 times a day, she doesn't have to wear oxygen at night, she's not BLUE, her poor little fingers are not purple and clubbed! She is still behind... she has physical disabilities from being blue for her whole life, but, she is getting better, and now that she has a whole heart, she can get better. She has a chance. Bottom line. She has a chance. A chance at NORMAL... a chance to run and play, a chance to go to school, to have friends, to get sick, to LIVE!!! I don't even think people knew how sheltered she was... I don't even know if people understand that all the times we were asked to go do this, or join that or do this or that, that the reason that we nodded our heads up and down and then never participated in anything was because we couldn't. Simple fact, if our family was not able to take care of Carla... then the answer was, we couldn't be a part of whatever it was. Because, we couldn't just bring her along to play with the other kids and have a chance of getting sick. A chance at being hospitalized again...or worse.
This new normal is starting to open up so many opportunities for our family to get a chance to live again. We are so blessed... I am so happy to be on this side of transplant I can't wait to start living again. It's going to take time before I can start to feel like a normal person again (and by normal I mean someone who doesn't have to worry about a chronically ill child). I will learn (I hope) to get excited again, to get that skip in my step back... to enjoy life again. I am so looking forward to life... a life that isn't kicking our ass at every turn (for lack of a better way to put it). Thank you to our donor family for giving us all this new chance at a life.