Wednesday, October 9, 2013

Heart update. The real deal.

We met the cardiologist from New Orleans today. He was our second opinion. He was GREAT! So good with o. Playing games with her and being silly. I liked him A LOT and am glad he's our "go to" if something ever happens to dr. King.

We had an EKG and then met him and dr king. Then he did the echo. He was able to get the perfect shot so we definitely aren't going to NOLA for any procedures. Praise.

He confirmed dr. King's diagnosis. I left our last appt pretty upbeat bc everything was working right. I can't say properly bc it's far from that. I left today with a better understanding of what we're dealing with and it's pretty serious. Basically no new news but some statistics that kinda scared me.

*50% chance she'll have a pacemaker by the time she's 20.
*possible heart transplant well into adulthood (age 50-60)

Or she could live to be 100 and never have any complications.

Our focus is to catch the heart block before it happens. We will continue semi-annual appts with EKGs and echos at each appt instead of just once a year. She will wear a holter monitor once or twice a year (basically a 24 hour EKG). We will watch for extreme fatigue, headaches, nightmares and fainting. Fainting is the last straw. I told the dr I wanted it caught and a pacemaker put in before she faints. He agreed and that's our common goal!

Her condition is rare. Basically the blue blood is still going to the lungs and the red blood is still going to the body. But the weaker side of the heart is pumping to the body and the stronger side to the lungs. It's supposed to be the other way around. Since the weaker side is basically working overload it could (COULD not will) eventually give out requiring the transplant. The switched arteries cause the heart block. That's a not very fancy word for irregular rhythm. That's where the pacemaker will come in.

I don't think "no news is good news" applies here. We really didn't get any news but I guess it just sunk in more. I've never been a paranoid parent and I don't want to be. But I'm finding myself watching her closer and comparing her activity level to her friends. I'm telling her to rest more often. And the other morning when she told me her head hurt I nearly drove right on past the exit for her school and headed for dr. King's office. Thank goodness I talked some sense back into myself!

As she transitions into adulthood her "case" will be transferred to a special unit at ochners made up of pediatric and adult cardiologists. She'll have one of each. The pediatric bc he's trained in congenital defects and the adult to address any issues that arise (how will pregnancy effect her heart, etc.) They will work together to address her needs instead of just throwing us to the wolves and telling us to find a cardiologist. This is a relatively new "thing" in the medical community and there aren't many in the USA. I'm so very thankful there's one just 5 hours from us; assuming o stays close when she goes to college!!

So we just continue doing what we've been doing with a tad more caution. We go back next month for the 6 month check up. Thanks again for the prayers!!

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1 comment:

  1. We love you O and you too Mama! We will continue to pray for your sweet girl!