Riley Norton's Weblog: Heading home??

Thursday, June 03, 2004

Heading home??

We have been hearing rumors that Riley might be able to go home tomorrow, which is a 180 from the possible six-week stay we heard about after he was first diagnosed with chylous. He is scheduled to have an echocardiogram tomorrow morning and if all looks good, the final drainage tube should come out. The only other hang-up could be him not eating and drinking enough to gain weight on his low-fat diet. So far, he's not a big fan of non-fat milk. The nurses will continue to weigh his diapers to see if he is getting enough fluids.

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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.