Parker

Parker was diagnosed with heart failure just a few days short of his 12th birthday while at a visit at the NIH in 2019. The NIH doctors were helping his neurologist, in San Diego, correct his muscle disease diagnosis. The news of Parker’s heart failure was both shocking and devastating to his family. Over the next several months they tried to live as normally as they could with their new diagnosis. Two months after his trip to the NIH, Parker began to have dangerous abnormal heart rhythms and spent a couple of weeks in the hospital trying to get them regulated with medicine. Upon discharge, they were not only prescribed new medications, but Parker was also prescribed and AED. He had to take one wherever he went. Over the next several months they experiences highs and lows as Parker’s heart began a gradual decline. Regular tasks became a chore or even impossible. Parker knew that his heart was slowing down, but nobody was prepared for what happened this past summer. Parker’s heart gave up. Medicine was failing him. Parker spent 15 days in the hospital in August getting a cardiac tune up, of sorts. When he was finally allowed to go home, he found himself back at the hospital only two weeks later with irregular rhythms. His team called him in to make some adjustments to his implanted heart monitor and correct his arrhythmia. Parker was prepared for an afternoon to, maybe, an over night visit. Once he was at the hospital it was clear that he wouldn’t be coming home anytime soon. Two weeks after he was admitted, Parker received a VAD placement to help pump his left ventricle. After several weeks of recovery and rehab Parker and his parents were preparing to go home to spend the holidays at home, knowing they would be back to be listed for transplant. Five weeks after VAD surgery it was clear that Parker’s heart, even assisted, did not have much fight left. He consented to go into a trial fibrillation and Parker finally conceded to staying at the hospital while he waited for a new heart and so he was listed for transplant. Parker received his new heart on Halloween, his favorite holiday. Three weeks later Parker went home! He is not home with his parents, brother and three dogs and is feeling great. For the first time in a very long time Parker is doing the things that a 13 year old boy should be doing. All because someone chose to be an organ donor.