Riley Mackenzie Norton's update blog
Riley continues to improve slowly. Here are some updates:
Posted by Mother in Chief at 4/13/2007 10:41:00 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.
14 comments:
Hallylooyaaaaa! I was thrilled at the title of the post - it is so great to hear some good news. Any step closer to coming home is a good step. Well done Riley, well done family. We're continuining to think of you constantly. All our love The Lawrences
We are thrilled that there is a light at the end of the tunnel! We know how long and dark those tunnels can be. Riley is an absolutely amazing kid and the love and strength in your family is nothing short of incredible. We send all of our positive energy your way. Love, Scott, Julie and Nicholas
I am glad to hear that you are getting some good news. You and Riley are in my prayers. I hope that you make it home very soon..
Glad to hear the good news.
Fingers are crossed!
Riley's a fighter.
Thank you for sharing this news. I will continue to send positive thoughts out to your family. The picture I am focusing on is Riley back home with his family. Love, zareen
How wonderful to be talking about coming home. I am glad your little guy is hungry too... that is such a reassuring sign.
I'm so glad that you are getting close to coming home. There is no way I want to see you guys when we come in on May 1st! Sending our love and best wishes to your family.
Yay! Hungry is great news; I think that's one of the most reliable vital signs there is.
That's great news! I knew you would all pull through....great job Riley!!!!
Continuing to send great thoughts,I think I can almost hear a Birthday Celebration as well as a coming home celebration as well!!! Melinda
Thanks for the update. We hope you are home soon.
I am thrilled that Riley is on the mend and home is on the horizon. On this, the Marathon weekend here in Boston,I know that Riley has certainly already run his 26.2 miles.
I just wanted to say that the last commenter on the last post had it all wrong. Just because you are in our thoughts and prayers does not mean you owe us updates-or for that matter anything. Our (internet wide) goodwill is not contingent on information rather I hope it based in pure well-meaning from people who understand how very special you all are.
-Liz (NUSL '93)
I'm so, so happy to hear this news!! I've been thinking about Riley daily...he's a strong little boy, there's no doubt about that.
Continuing to pray for all of you.
great news... we're looking forward to seeing the home post.
all our love,
nicole, blake & owen
Fantastic !! Riley continues to amaze us with his perseverence ! I will see you tomorrow. Sending our love !
Joce
Post a Comment