Riley Mackenzie Norton's update blog
I did some math last night and realized that during the past year, our little family has spent 10 weeks in the hospital. Oh, and I guess we can kiss my wish for a "healthy and hospital-free 2007" good-bye.
Posted by Mother in Chief at 3/25/2007 08:26:00 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.
6 comments:
I'm sorry. Its so exhausting living in hospital - especially with another child at home.
I hope Riley does better today.
So sorry. I hope these recent symptoms turn around and Riley feels better today. Thinking of you.
Joce, Naomi, Tom
i cant seeem to get my mind off of riley.. i lost my 50 year old brother to melanoma on february 25, then my mom three days later on the 28th to lung cancer.. she wasnt ready to die.. she had just been diagnosed three weeks prior to her death.. she died of a broken heart. she had to be with my brother joey.. hearing of riley's chest tubes kills me.. my mom was in soooo much pain from the chest tubes that it would kill me.. i would throw up... god bless that sweet boy... i have been praying for him... i pray that the lord will keep him as pain free as possible...i aslo pray for you and your husband... lord give them the stength they need to get riley better and home with carter... my heart is with you and riley.. i check your journal everyday.... god bless you riley...love, the mcintyre's... mark, gina, kristin, ashley, cody, colin and isabella
thinking of you guys and hoping riley has a better day today. let me know if there is anything you need. chin up and all that...
-rhea
I can't begin to imagine what the last year has been like for you, Suzanne. Having to endure yet another surgery this year after what you went through last year... it seems so unfair. We hoped and prayed that it wouldn't come to this, especially not so soon after last year.
I wish we could say or do something to relieve your pain, but the best we can offer is love and support and prayers and hope. Hang in there.
I am so sorry things are so crappy. We are sending our most positive thoughts and hoping hoping hoping that things get better for R very very soon. We love you guys.
Jude and family
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