Bekkah and I spent the afternoon at the hospital for her heart check up. They did the usual battery of tests, the worst is pulling off the "stickers" from the EKG. She squeezed her eyes so tight it almost made me cry. I wonder what she must think in her little mind as she watches me smile and ask her to hold still while doctors and nurses inflict pain on her. She's such a strong little girl.
THE PROGNOSIS:
"There are two schools of thought in medicine," her electrophysiocardiologist explained to me, once he examined her. Old school is "If there are no symptoms or they are under control, don't do anything." The new school is more proactive. They say, "fix it now before problems arise and it's too late to fix." Dr. Andrew Papez is most definitely from the new school. Unfortunately she is still too small. Her accessory pathway (extra path the electrical pulses go through that make her heart beat too fast) are much too close to the AV node (normal pathway) which makes surgery very dangerous as they could accidentally close off the AV node and he thinks there may be more than one extra pathway. Her Ebstein's Anomaly (malformation of the tricuspid valve) will get worse as she grows. If the blood volume that flows backward into her other ventricle continues to increase, she will not get the oxygen she needs. The procedures to correct this valve surgically are not very good and often patients come out of the surgery worse off than when they went in, if they come out at all. With all this he was cautiously optimistic. He is thrilled that she is stable, and amazed at her size, color and the sparkle in her eyes. Most Ebstein's babies are small, frail, and somewhat lethargic. He is taking her off of her current medicine because the side effects can sometimes cause cardiac arrest and it makes her skin blister in the sun. The new medicine is not as effective but safer. We'll try it and pray she remains stable.
THE RESULTS:
There's nothing like a day in the doctors office to give you a reality check. Those little daily problems like quarreling kids, homework struggles and financial obligations that seem insurmountable one day, don't seem quite so bad. Pull your little ones onto your lap today, and hold them tight. Life is so very fragile.
3 comments:
Thanks Katie for sharing your thoughts & for the reminder. It's been a hard week with these kids--and I am grateful for the reminder to focus on the positive! You are such a wonderful example for me! We will continue to have Bekkah, and the rest of your family in our thoughts and prayers! We love you!
Tami
Poor sweet little girl! I can't even imagine what she thinks going through all of that, but I also can't imagine what it is like for YOU!?
You are amazing.
Please know that my prayers are with your little sweetheart.
I hadn't realized this was ongoing. Hopefully her Huston tenacity will benefit her and help her fight through it. As mom, I feel for you. Even though I started out with a baby in NICU, as I've gotten older I hate the dr. office more and more.
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