Blake's Story - Part 3: An Altered Reality

Author: American Heart Association:1

- Blake has undergone three open-heart surgeries since he was born, his first one was the Norwood procedure that he had when he was seven days old. His second one was the Glenn procedure which he had when he was five months old. And then his third one was Fontan which was performed when he was three and a half years old. So, now he's almost five so we've almost been a full year and a half without a surgery, and it's an amazing feeling. But seeing the difference after each surgery was what's really, kind of profound, they each have their uniquenesses about them.

Obviously the Norwood kept him alive, it kept blood flowing through his heart. The Glenn started the rerouting in his heart and helped his body start to deal with the fact that he was getting big, and he was getting more active, and it had to pump more blood to his body. But it hurt his head because he had never had that much blood going to his head before, so he constantly had these headaches, and it was just an awful recovery for him, and because he was so small, he couldn't tell us anything, he could just cry and be sad. And then after the Fontan at three and a half he was a kid, he was a kid with a personality, and opinions, and he recovered amazingly. He went from having oxygen saturations in the 80s to being 99 or 100, which he still is when he goes and visits the cardiologist every six months now, and being able to do things that we never thought he'd be able to do, but it also puts a lot of fluid in his chest, and so we were in the hospital, what seemed like forever, it wasn't, but it was about 17 days after his surgery just letting all the fluid drain away from out of his heart.

So you have a kid who's feeling good and wants to go home, can't leave because he's got chest tubes, but to see him now, all of those things were completely worth it. When he came out of his third surgery I realized that it was the first time I had seen my child pink. He was pink. He had pink lips, he had pink fingers, there was no tinge of blue to him, and when he woke up all he could say, is "Why won't anybody hold me?" And it was just, I mean, I laughed, I cried all about it because I was so happy that my child was here and he was pink, but so just wanted to embrace him and couldn't 'cause his little chest was cut open. One of the things that Brian had decided very early when we decided to put him through the series of three surgeries is that we were going to raise him as a normal kid. We wanted him to have the best childhood that he could have. Because his heart will never be fully repaired, we don't know what the outcome for Blake is, we don't know what the future holds for him.

We are very optimistic because science has advanced so much, even in the year since he's been born, I think that there's a lot of hope for him and his heart, but we wanted to make sure that he had the best childhood that he could. So it was important to us that within his limits, that we allowed him to go places, we allowed him to interact with other kids, we allowed him to play sports that didn't impact his chest. We wanted him to be able to play sports as long as it didn't impact his chest. We approach everything with, let him try it, we are always there to support him and we always make sure that he knows that if he needs to take a break then he can, we keep him well hydrated, you know, we live in Texas, so it gets hot, so we need to be able to be sure that he takes breaks and he doesn't spend too much time out in the hot sun getting dehydrated, but as far as he knows he's just like all of his friends and just sometimes he runs out of breath a little bit faster so he'll sit down and he'll take a sip of water and he goes right back out there. We kept a thorough blog of everything that was happening throughout Blake's surgeries, throughout, really the first four years of his life, and it wasn't my decision, it was Brian's decision, and I'll tell you how it happened was because I got tired of talking to people on the phone. Because I'm so emotional, every time somebody called me when Blake was first born I got too worked up every time somebody called, and I'm a writer as one of my passions, and so Brian encouraged me to channel that energy into a blog so I didn't have to repeat myself all of the time, but what it turned into was not only a catharsis for me, but also a resource for other people. I've had people contact me from all over the world that have told me how it gave them hope and strength when they didn't know what was happening when they faced a diagnosis, or when their child was about to go through surgery and they didn't know what to expect, it gave them something to refer to, and to me that's the best thing possible that could have come out of it is that if we could help one other person then it was totally worth it. One of the things that was very important to us when Blake first underwent his surgeries is that we signed him up for a clinical trial.

Blake's Story - Part 3: An Altered Reality

In the clinical trial was to monitor the oxygen levels in his brain while he was on the heart-lung bypass machine. They suspect, the hypothesis is, that the lack of oxygen to the brain can cause some amount of brain damage in these children who are on the heart-lung bypass machine for awhile, and the trial was to monitor it. To take an MRI beforehand, to monitor it very closely while they were on the heart-lung bypass machine, and then to monitor it after his surgeries. And of course we don't know the outcome yet, because they won't be revealed until five years after the last person goes through the trial, but knowing that: A, either we're helping science and we're helping advance science for some other child or that our child may have benefited from some new medicine or some new technology was very important, and knowing that he would never get less than the standard of care through the clinical trial, I feel like if there's an opportunity for somebody else to try to advance science in this way, then they owe it to themselves and they owe it to their children and they owe it to all the other children that are gonna be born with congenital heart diseases to do the same.

I think that you have to take every day one day at a time. You have to treasure every moment and every laugh and every smile that you have with these amazing children. But you can't forget about yourself, and you can't forget about the rest of your family because you still are in this life, you have this child with this remarkable heart, this child that is living a remarkable life, but you still have to be who you are, and be true to yourself and be true to your family. If there was one thing that I wish I had known, it is that there is the potential for an amazing quality of life for these kids. When we heard Blake's diagnosis, when we were going through the first surgery, all I kept thinking is, am I doing the right thing? Am I putting this poor child through this traumatic surgery to have no quality of life, and what am I doing? To see him today, and to see him happy and smiling and playing with kids and going to preschool and about to enter public elementary school, it's huge, and I can't imagine not doing this for him, I can't imagine not being connected to the people we were connected with when he was first diagnosed, to see other families who had gone through it, and to see that there is hope and there's so much potential for these kids.

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