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The Fontan - The final stage!

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Kacy had her Fontan operation on January 23, 2001. This will hopefully and God willing, be her last open heart surgery. Only God, time and technology will tell. But from here we go forward in raising our daughter to be the best she can be, in everything thing she does, and treating her as if she has little to no limitations on what she can accomplish. And after seeing her patience, her courage and her strong will after this long and painful hospital stay there is no doubt.

On January 23, 2001 Kacy had her Fontan (with hepatic vein exclusion)with Dr.Norwood at AI duPont Hospital. The surgery took less than 2 hours and she was back in our room within 24 hours. Kacy was doing very well until the third day she started getting pleural effusions.We have never seen anything so horrible, miserable, uncontrollable and uncomfortable as this fluid build up around the lungs.This experience was the worst in all of Kacy's surgeries and recoveries. Kacy had her right side drained once, her pericardial space twice and her left side over and over again. It was drained only enough to make her comfortable, because draining more may only cause more to build. Because they were draining so much, she had to have IV's so they could give her albumin and plasma to replace what they were taking out. But the IV's kept blowing and the one time they put the central line in that should have lasted her stay, Kacy blew by rolling and moving around because she was so uncomfortable. It was hard to see her like this and we felt so helpless. Finally after three weeks they decided to take Kacy in the cath lab to see if they could find a cause for why so much fluid and for so long, and lo and behold they discovered her hepatic vein, which was to be excluded had occluded. The vein had narrowed thus causing the fluid to the left side. They put a stent in and put her on a continuous drain to give her left side time to heal because the fluid had caused the lower left lobe of her lung to collapse. A little over 2 days and 180cc's of drainage, the fluid build up had stopped! So after a month and a day stay we finally went home!

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