Riley Mackenzie Norton's update blog
Just a quick note to say that more than one liter of fluid poured from the stomach drain and 600 mililiteres came from the lung drain in the first 20 minutes. That means that there is a little more wiggle room to keep giving him IV nutrition. They had to halt nutrition because he was so fluid over-loaded. He needs nutrition for his organs to heal as well.
Posted by Mother in Chief at 10/13/2014 01:30:00 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.
13 comments:
My wife and I have been following the progress i know i have not said much but our prayers are with you and your son. Looking forward to the update that he has turned the corner and getting better.
Hoping things turn around soon. Your family is in our hearts. Thinking of you all and sending our best wishes for healing. Love from the Lilas.
Prayers are with you all. Hang in there. We are looking forward to more pink stories :) Fletcher, Lindsey, Julie &Mike
We love you xx
You are all in our thoughts here in the uk .Judes Mum and Dad.
Thoughts and prayers are heading you way.
Hoping that Riley responds well to draining off of fluids and that he can get the nutrition his body and brain need. Sending love and strength to you during these difficulty days.
I can't imagine what you are having to go through. We are closely watching the updates and praying for Riley and the entire family. Kim, Brian, Derek, and Jenna Sichlinger
Thanks so much Suzanne for your reports. I want to come down there and see you guys and bring you an iced tea or maybe a Scotch or a bottle of wine and walk around the block with you. At the same time I want you to have your space. Your posts are so helpful from our end out here. My thoughts and all the metaphysical energy I can muster is going Riley's way.
Suzanne, I probably sound like a broken record but I am praying for you guys. xoxo
I couldn't hear this enough when Cassidy was in the hospital for so long....so, I'll say it to you: we love you and have you and Riley (and Carter) in our thoughts all the time. I hope you are taking a little time to take care of yourself...I want to come up and give you tons of hugs but know you also need your space. Love and healing thoughts for Riley and you. xxoo
love,
Gwynne
Suzanne - I don't know you or your family very well, but I have been following this (you write beautifully, BTW). My heart goes out to you all. Sending positive thoughts to you and yours...
Suzanne, I wish I could give you and Riley a hug. You remain in my prayers.
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