Riley Norton's Weblog: Four-day fever

Thursday, November 18, 2004

Four-day fever

Riley has had a low-grade fever (hovering just about 100 degrees) since Sunday. He has not been eating and has lost nearly a pound. He saw his pediatrician on Tuesday and Dr. Bernstein looked at his ears and throat and listened to his chest and said it's likely just a virus. There isn't much we can do, except let him rest and try and get him to drink plenty of fluids. Thankfully he's still nursing, so he has been getting some nutrition from Mom. We've been giving Riley Tylenol to lower his fever. He seems to be a perking up a bit today, thankfully, and he did have some breakfast. So, hopefully his appetite is coming back and he'll be feeling better soon.

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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.