Just a quick picture of Riley and Mom in the PICU, before he had the breathing tube removed.
Wednesday, March 21, 2007
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Riley's Medical Condition
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.
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5 comments:
Good to know that tube is out now and that he is awake and doing better. I hope you have a quiet night and that the positive steps continue. We're still holding you in our hearts
Jude and the gang
It really hits home to see him with all those tubes and wires coming out of him. No matter how many times I read about it, it's still shocking to see. He's been through so much. What a tough little guy he is.
Good luck tonight, and God bless you all.
My heart goes out to you guys. These kids are such fighters....not that they have a choice in the matter. What sometimes gets lost in the mix is what fighters you guys, the family, are, too. You are amazing parents doing an amazing job in a situation that no parent should EVER have to go through....but here we are, right? I hope you take solace in the fact that you are such a strong and loving support for Riley. I'll call soon to see if you need anything. Keep hanging in there and hopefully you'll be getting your little guy home soon to be with you.
all my best,
Gwynne
OK, now you're on the other side of the surgery. You're over the mountain and coming down the other side.... 40 minutes on the bypass - that's OK - he'll still be a brilliant little boy.
Big hugs...
The Singh Family
So glad to hear that stats are normal and he is extubated. We are continuing to pray for progress. HAPPY BIRTHDAY KEN!!! Love you all, Auntie Karen and Stephen
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