Saturday, November 22, 2008

My Heart Family Grows

Well, the heart issues in my immediate family continue to grow. When Tommy was diagnosed with his CHD, it brought heart defects sharply into focus. Well after his birth I found out my grandmother was born with a heart defect that was repaired as adult. Then my husband developed congestive heart failure. Yesterday, I went with my sister and her daughter to the pediatric cardiologist where her daughter was diagnosed with a mild CHD. Talking with the PC, I also discovered my sister's son also has a CHD. Neither are life threatening, but this is all genetic.

They are 11 and 8 years old. Had heart defects been brought to my attention that long ago, maybe we could have been better prepared for what we faced with Tommy, although I don't think any parent would ever be prepared for the road we traveled with him.

I was a little sick to my stomach and stressed being in a PC office again. I felt empty and alone. I wanted Tommy to be there in his stroller laughing at me. I wanted to see the scowl on his face when the nurse brought out the blood pressure cuff. Oh, how he HATED that thing! I watched my niece's echo with facination. It all came flooding back to me. I peeked at her chart and saw abbreviations and knew what they meant!

When we got to the doctor's office and he began to tell my sister her daughter's diagnosis, all of my knowledge began to simmer at the surface and bubble over. I knew what he was telling her. I knew the medical terminology. I had a hunger to translate and explain what was going on. So much so, that I asked the doctor if he needed a Patient Advocate. I gave him my business card and told him to call me if there was anything I could do for his office. I think I will follow up with a detailed history of Tommy and all of my hospital "experience". I am sure all of the wonderful people that helped take care of Tommy at MUSC would send wonderful recommendations for me.

I don't know what this will lead to, but I plan to follow through with something.

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Diagram of Tommy's Heart Defects

Diagram of Tommy's Heart Defects
Double Inlet Left Ventricle with Transpostion of the Great Arteries