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We are home FINALLY!

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I wanted to let everyone know that Zachary came home today from the

hospital where he has been for the last 4.5 months. What a wonderful day!

He was originally admitted for a nissen fundoplication - a redo of his

original. Because his dysmotility, which had always been moderate became

exacerbated immediately after the surgery his recovery became extremely

prolonged. Eventually a jejunostomy was done and a central line was

placed. His recovery was also complicated by adrenal insufficiency and

bacterial and yeast blood infections which were quite persistent.

He is about 75 % TPN and lipid dependent now and the rest a slow drip

through the J tube. He will continue to need antifungal treatment for the

next month at home for the yeast with IV amphotericin infusions.

The most important thing though is that his spirits are great and have

remained so through all of this. He is thrilled to be home and be with his

siblings again. The sun is definitely shining at our house today.

Anne- mom to

Brittany,12

Zachary,7

Abby,6

, 26 mos.

------mitochondrial disease, (complex I and IV)---------

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