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.

Saturday, November 15, 2008

More Updates

Rob missed the boys so he came home from KS. The job was very stressful for him and he was struggling every day. I have a lot of good job leads and so does he. Monday I'm off to put in more applications. With it being so close to Christmas, surely someone will be calling me soon!

I can't tell you how good it is to have Rob with the boys. They missed him so much!

Sunday, November 9, 2008

Had a Wonderful Weekend!

I have not seen my boys for 2 months and 3 days. I was able to pick them up Friday night and we've spent the entire weekend together! They've had a great time playing with their cousins, watching movies and making s'mores in the microwave.

I've enjoyed cuddling Brandon every night. I loved watching Matthew getting chocolate all over his face last night. I have listened to Brandon say his ABCs and counting to ten! Matthew has been a big helper and both of them are just a sweet joy to be around.

I can't wait to get to a place where we can all be together and settled as a family again. Rob called about 20 times a day to check on them and ask me how they were doing.

They've both brought up Tommy to me. They miss him. Matthew is in a grief group at his school. I hope we can find a way for Brandon to be able to talk to someone (professional) too.

Thursday, November 6, 2008


What a whirlwind this has been! Rob expanded his job search nationwide and was able to secure employment in Kansas. I am home in KY and looking for work. I'm also being treated for my long battle with depression.

Our goal is to have a transition period for our boys. If I am here in KY with them, they can keep their familiar surroundings while getting to know me again after not being able to see me for two months. Then, when our income taxes come in, we can move the family to Kansas with Rob for a fresh start in a brand new place. That being said, if for some reason this job doesn't work out or Rob decides KS is not where he'd like our children raised, then there is the option of just staying in KY.

It is all very much a day to day thing. The important thing is that we are moving forward as a family, one day at a time. We are still struggling, but once Rob starts getting paychecks and I can start a job, things will start to feel less constricting.

I have an appointment this morning with my counselor, and then I am putting in job applications until my sister gets out of work and can pick me up.

I also want to thank everyone that donated to helping get us to KY. From now on, any money donated with go directly to funeral expenses and eventually a headstone for Tommy.

Diagram of Tommy's Heart Defects

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