Keoni Rodriguez
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Keoni was diagnosed in utero with cystic hygroma (lymphangioma) at our 20 week ultrasound. He was born via C-section on May 7, 1999. He was delivered to his shoulders and immediately intubated. We were both under general anesthesia. He underwent a 10+ hour surgery when he was exactly one week old. They removed 90% of the cystic hygroma and a tracheostomy and gastrostomy were performed at the same time. He was g-tube fed for most of his first year and now is able to eat on his own most of the time. (He still has a g-tube) Keoni had surgery again in February 2000 to resect more of the cyst as it had grown back and was threatening to overtake his trach. He is doing well now and has learned to sign very quickly although he has begun to say words recently. We are not sure how long he will have the trach and hope that it is temporary.
Update April 2004: Keoni has been having a series of surgeries at Arkansas Children's Hospital with Dr. Milton Waner since March 2002. These resulted in the reduction of the mass in his throat and his chin. They are also doing laser work on his tongue and in his trachea. He will go again in March 2004. Our goal is decannulation before he starts school in the fall, but we will see how everything goes.
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Hawaii 2003
Update 2007
I'm happy to inform you that Keoni was decannulated on July 3rd 2006.
Our family update blog is now here:
www.xanga.com/laryna
Laryna Rodriguez
