Riley Norton's Weblog: Going home!

Friday, June 04, 2004

Going home!

We don't want to get our hopes too high, but we should be heading home within an hour. They took out the final drainage tube this morning, did and echocardiogram, and are working on an EKG right now. We still aren't clear on why they said we'd be here for a minimum of another two weeks after the torn limphnode was diagnosed, but we don't want to question it too much. We can't wait to get out of here.

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Riley's Medical Condition

Riley was born with congenital heart defects that were detected shortly after birth. He has a condition called heterotaxy which means his internal organs are reversed. His heart is on the right side of his chest. He is also missing a spleen, a cardiac-related condition called asplenia syndrome. Riley's heart only has a single ventricle and a common valve. Before treatment, oxygen poor blood mixed with oxygenated blood causing severe cyanosis ("blueness").

There is no cure for Riley's disease but a three-stage palliative treatment is commonly performed. A few days after birth in April 2003 surgeons at UCSF performed the first stage, a BT Shunt. In May 2004 surgeons performed the Glenn Procedure. In March 2006 Riley underwent the Fontan Procedure, the third stage. Riley developed protein losing enteropathy and in March 2007 received a Fontan fenestration which failed, followed by the Fontan takedown in April 2007.

In 2014, Riley began developing arteriovenous malformations in his lungs. That's an indication that his Glenn circulation is not holding up. In October 2014, Riley went to Stanford for a 1.5 ventricle septation repair.