Riley Norton's Weblog: Having fun and playing

Tuesday, June 01, 2004

Having fun and playing

Riley is in much better spirits today, he sat up for several hours and played with some of his favorite toys. He smiled, laughed and chatted with Mom and Dad.

We had hoped to be stepped up to the special care unit today, but it looks like that's not going to happen. His intracardiac line also will stay in. On the upside, his chest drainage has slowed to a crawl and only a tiny bit of fluid has collected today. They will keep him on the special IV through tonight and maybe tomorrow put him on a formula that he can take by mouth.

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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.