Riley Mackenzie Norton's update blog
The room opened up and we're heading down to the OR now. Riley will be intubated and prepped for a complete surgical procedure. They're expecting it to take 2-3 hours and will check in with us once they've gotten the stent in place. Think good thoughts.
Posted by Ken Norton at 3/30/2007 03:55:00 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.
25 comments:
All good thoughts for a great outcome. I hope this helps. Lots of love for Riley from Boston.
Sending positive thoughts and prayers to you.Love,Melinda
Thinking and sending so many good thoughts that my head just might explode. We're there with you guys in spirit. All our love & prayers for a successful procedure and quick recovery.
We are thinking of you & Riley and hoping for the best result from this procedure. Feel our love coming from Santa Barbara....
xoxo,
The Honikmans
Tj, mom, dad,dave d and I are sending you all of our strength, love and prayers for Riley.
Big Hug!!!
love, Zareen
In our thought. Always. I've got a whole crew over here praying for you guys.
Sending my prayers and thoughts to you all. Hope this helps. Love Laurie
prayers are being sent to riley... i will pray the rosary for riley before bed... gina
My love and prayers are with you all at this time.
Elizabeth(Helen's mother)
Thanks for keeping us informed, Ken. You will not leave our thoughts tonight.
You are in our thoughts.
You are always on our minds...thanks for the phone call update. Love you all,
Grammy and Wayne
All our most positive thoughts are with you guys, especially Riley. Suzanne, please call if you want/need to talk. We love you all.
Gwynne, Patrick, Cassidy, & Finn
Our thoughts and prayers are with you. Hopefully this procedure will finally have the right outcome.
I'm praying for only good things. Actually, I've got a crew of people praying for Riley too.
Ken and Suzanne, my thoughts and prayers are with you and Riley. I think about Riley every day and wish that everything will get better soon. Please let me know if you need anything at all, I am always up for making a trip to S.F. if there is something that I could do for you and your family. I miss Riley very much and really enjoy him as a student, he is such a sweet child and I want you to know that he will always have a place in my heart now. I hope everything goes well and that I will be able to see Riley soon.
Much love,
Teacher Shelley
We are glued to your updates and are sending any and all good thoughts your way. We are hoping that whatever they end up doing it is a success and Riley can start healing.
The Sommers
Keeping our fingers crossed for you guys.
More love from Beantown....
sending you all our best thoughts, hopes and wishes for a turn for the better after this trip into the OR. the boys are asking me to check all day to see if there is any news about riley. your blog posts are so important to those of us "in your corner" while you guys fight the good fight there at UCSF.
much love-the dreyers
In our prayers, thoughts and hearts. This beautiful boy is such a strong soul. we love ya in Buffalo too, Big Guy!!
Blessings,
Grammys friend, nicki
You know we're hoping hoping hoping for this to turn out well. We're thinking of you every minute. We love you.
Jude, Chris, Ruby, Elsa (and the extended family who are praying hard)
we are praying!
Hoping and praying that all goes according to plan and that we can truly start the healing process. Much love, Auntie and Stephen...we'll be there soon!
Love love love love love love love love love and more love sent from the Jordan-Shamis family (Robby-ey-ey, Helley-ey-ey, Jaspy-ey-ey and Osky-ey-ey)
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