Riley Mackenzie Norton's update blog
Riley lost about 400cc of blood from that left chest tube but it has slowed considerably now that they've ceased the tPA. They're giving him a blood transfusion now and his blood pressure has picked up a bit. He won't be able to drink anything after 10am so I'm working to keep him hydrated until then.
Posted by Ken Norton at 3/28/2007 09:01:00 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.
9 comments:
All I can say is that our thoughts, prayers and feelings are with you. As difficult as it sounds, try to stay strong. We are all sending positive thoughts.
Thanks for update. always in my thoughts and prayers
Grammy
I am thinking about you guys and we are sending positive thoughts your way.
Jennifer,Jeff and Maddie Mayorga
Just echoing the above sentiments - you're always in our thoughts as you battle through these new complications.
Delurking to say I've got my crew in the South Bay sending good karma vibes and prayers your way. I used to read Suzanne's parenting blog and have a godchild with similar symptoms. (He has Barth's Syndrome--different can of worms, but similar cardio issues.)
Stay strong, you all have already been through so much, this has to change for the positive soon.
Am thinking of all of you in my thoughts and prayers. Riley, stay strong! :)
me too... i echo all the sentiments of everyone else. i'm rooting for you guys with all my heart!
How stressful for you guys. I sure hope this blogging helps you guys deal with the stress of all this ******* ****. If it does, blog away guys, and we will listen. Things gotta get better soon, you need a break.
Thoughts and prayers from Cassie and Brenda. Hugs and kisses to you Jack.
We are always thinking of you guys and hoping for a turn for the better. We love you all and know you'll get through this too.
Love, Kristina & Matt, Jack, Sam & Quinn
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