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Snuggling with Freddie & Freddie Jr. (left) |
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Poorly perfused feet :( |
(This blog will provide Riley's medical updates. To read about his mother's state of mind, go here.)
Riley Mackenzie Norton's update blog
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Snuggling with Freddie & Freddie Jr. (left) |
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Poorly perfused feet :( |
Posted by Mother in Chief at 10/13/2014 07:24:00 PM
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.
5 comments:
I am going to take this as a positive sign that they were able to get his blood pressure up on reduced medication. Still a lot of hurdles, but I believe we have to grasp onto the positive signs. Maybe they, too, come in threes....keeping fingers crossed and prayers going.
May you receive more good news SOON ... Staying "prayed up"
Thank you for the clarification of which penguin is Freddy Jr. in the photograph (left), I wasn't sure which one was which. A momentary smile thanks to your excellent reporting. You are the best at so many things, including loving your boy more than the earth and stars. The rest of us, who love you, are holding our arms around the rest of the galaxy so you don't have to tonight.
Roger that Jessica. Also think Jeff Schwartz (sp?) speaks for many if not everyone. Love to you all.
Work heart, Work Kidneys, Work Liver, Please. Love to you.
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