Riley Mackenzie Norton's update blog
The tubes are out. Riley did great - Child Life kept him occupied with a Cars book and the dilaudid did its magic. He's very groggy and sleepy right now, when he wakes up he should be a lot more comfortable. Next steps: figuring out the anti-coag/blood thinner strategy and getting him learning to walk again.
Posted by Ken Norton at 4/16/2007 09:35:00 AM
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.
4 comments:
go Riley!! we have been following your page for a while now and praying and thinking of you daily. We hope that you are feeling better now that the chest tubes are out! we hope that you start feeling hungry again and can go home soon. Your one strong brave little boy! your parents are amazing! love wyndi izabell's mom PHACES syndrome IAA VSD HB MVP
Hip Hip Hooray!!!!
Loveyou
Grammy and Wayne
Go Riley....you have come so far,YOU CAN DO THIS!
Everyone is rootin' for ya!
We love you big guy.
Melinda
So glad to hear of the progress. Thanks for the update.
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