Riley Mackenzie Norton's update blog
Nothing to report here right now. We went home for the night to get some rest and are about to head in. We were told that they wouldn't try to wean Riley off the machine or do anything significant overnight, so we felt safe in heading home for some sleep. Once we get an update, we'll post it here. Thanks for your continued thoughts and prayers.
Posted by Mother in Chief at 3/26/2006 10:02:00 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.
5 comments:
Glad to hear you got some rest last night. We'll be thinking about you today.
Good Morning. I am glad you all tried to get some rest at home. Baltimore (Stephen, friends and me)is praying for Riley and you every minute we can. An email came in from my friend, Peggy, too - sending her prayers and love from Buffalo. A phone call came in from Cousin Beth in New Jersey also expressing her prayers and thoughts. I miss you and ache terribly to be with you. I pray that Riley has responded positively to the ECMO and that recovery will progress from here. Much love, Auntie Karen
Dear Ken and Suzzane...we just wanted to let you know that we are praying for you and Riley. God is the divine healer and great physician!!! May you rest knowing that He is holding Riley in His arms!!
Love, David, Kristen (Gray) and Caleb Coffee
Sending love and prayers for you and sweet Riley. The Dreyers
Get some sleep tonight.
sending good vibes to you guys.
-Dave and Marisa
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