Frustrated

Today is the 20th day that we have been here at MUSC.

Here is my story.

I was born on December 13, 2000, in Greenwood, South Carolina at Self Regional Medical Center. I was born with HLHS (hypo-plastic left heart syndrome). On the 14th of December, I was medivaced to MUSC for the first of three open-heart surgeries. My last surgery was in August 2004. I have since been living as normal a life as I could with the limitations that I have.

On November 12, 2009, I came to MUSC for a routine heart cath that would assess me for candidacy for the heart transplant list. I never left. I had a vagal response to my breathing tube and because my body was so weak, I could not get my heart to restart. Thankfully, I was brought back and was running along smoothly until November 16, 2009, when my sub-clavical artery line erroded and my nutrition was streaming into my chest cavity. I was moved to clean the site and the fluid cascaded into my chest, literally drowning me. At that time I was brought back and was placed on ECMO (heart and lung bypass machine) and put on the heart transplant list. For eight days I was on ECMO until a heart was made available to me by a very gracious family in Virginia.

The transplant was completed on November 25, 2009, and I have had to ride a very bumpy roller coaster ride. I was very sick when I came to MUSC, and because of that, I have had my set backs.

I came off of ECMO after surgery, and seemed to struggle, my body was not used to having so much oxygen and good blood pulsating through it, and so I struggled. Then on November 30th, my carotid artery that the ECMO machine was using, burst and I had to have that artery "sacraficed" and closed off. I had a pretty good day on December 1, 2009, but today, another bump in my road, and as soon as my parents know anything, mom will post.