Riley Mackenzie Norton's update blog
Riley is back in the ICU and we've been able to see him. He was on bypass for an hour and received a lot of blood products (three units of whole blood plus FFP and albumin). Dr. Karl did not put the aortopulmonary shunt in so he has been reverted to a pure bidirectional Glenn. His saturations are mid-80s right now. He will probably stay intubated through the night. More as we know it.
Posted by Mother in Chief at 4/01/2007 02:03:00 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.
12 comments:
Thanks so much for the update. You have all been on our minds all day. We are still keeping Riley in our thoughts and hoping for a quick recovery and some resolution to all of this.
Thanks for the update.
Keeping an eye out
-Dave
Thanks for the update and phone call Grampy. Our minds are still on you all out there. Give Riley a kiss and hug and Carter too. Loveyou
Grammy and Wayne
Suzanne, thank you so much for the update. We are so relieved that he's out of surgery. We will continue to pray for a speedy and uncomplicated recovery. Sats in the mid-80s sounds pretty good, maybe the shunt wasn't necessary after all. It sounds hopeful.
We are praying that soon you will get everything you wished for in your last post.
So glad he is out of surgery. Thanks for the update, Suzanne. Thanks for the phone call, Grampy. And, thanks for the text message, Ken. It is hard to feel connected with all this. But, we are there in spirit still. We pray for a good recovery so Riley can get back to the things and people he loves. See you Friday, Auntie and Stephen
praying for riley to make a full recovery and get home soon.. prayers will continue in my home for riley.
Still thinking of you and checking Riley's progress hourly.
Jane, Ramona's mom
Continuing to pray for Riley and so glad he's out of surgery. he's such a strong, miraculous little guy.
I'm glad to hear that Riley is safely out of surgery. I have been thinking about him and praying for him all day. My heart aches for you. I know some of what you are going through and it is almost unbearable. I am inspired by your strength and ability to get through this discouraging situation. I pray that you will have your happy Riley home with you again soon.
Thanks for the update.I will continue to pray for Riley.Ken and Suzanne you two are wonderful parents. Riley is so lucky to have you. You two have gone through so much grief in Riley's short life, yet you seem to keep it together for the little guy. Just keep being there for him and I feel everything will work out. All my love Laurie
April 2
HAPPY BIRTHDAY RILEY. WE LOVE YOU. SEE YOU THURSDAY,
Grammy and Wayne
I popped over to the hospital yesterday. Saw Jack, Suzanne and Riley (through the window, Riley that is) They were keeping him sedated overnight to reduce the stress.
Uncle Richie
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