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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Thursday, January 30, 2014

Cardiac Cath day!!!

Most things for Alex's heart transplant evaluation have been scheduled and moved on... Some times I feel at neck break speed... Whip lash anyone? On some days we/I hide at home for an ugly grief session until I can put on my big girls and face the challenge. (Or muddle through) I get so frustrated that things are out of my control. I suppose that is what this trial is meant to teach me. Giving up the control to the universe.. To Heavenly Father... To those who will help. In the end I realize that once I do forgo that control issue; healing, fighting, and peace will soon follow. 
So today wasn't as scary and worrisome as it could be. We dropped off the girls so very early.. We know we are loved when we show up at our helpers houses at 5 A.M. In jammies to. We also got 5-6 inches of fluffy white stuff. The good kind that makes great snow men. It pushed all the gunk out of the air so Gator was itching to play in it. The roads were great beyond the neighborhood. Gator was happy all morning and compliant as usual. Just a little on the hungry/thirsty side. I could only say " Me too!" Other than that, he is great at not stressing out. He was excited planning Ramen noodles for lunch.. He also chose watermelon 'sleepy air'. We left him a little while ago. 
The gist of this procedure is; pre-listing doctors like to have a clear idea of what pressures are like in your heart. Also, they like to coil off collateral veins. 
To explain collaterals, think of a house.. It has a main water line... If you turn on one water faucet at a time you get great pressure. Having collaterals is like having all faucets, the shower, dishwasher, and washing maching going all at the same time... The pressure isn't that great and therefore makes a trickle... So, they take these tiny wires and essentially shut off the faucets or extra veins that his body has created. It is hoped that it will improve his blood flow. Okay that was a really rough explaination. Hopefully it made sense. 




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