Riley Mackenzie Norton's update blog
Just a quick update to say that the earliest we'll be getting out of the hospital is Monday. It all depends on this wacky coumadin. We got the first result back Friday morning and the numbers were off. That means they need to keep tweaking the dose until they get the levels right. I don't totally understand it, but I do know that it is a huge pain in the arse.
Posted by Mother in Chief at 4/20/2007 10:13:00 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.
6 comments:
hey, i'm so glad to hear that you guys are getting closer. these last days must be a bit frustrating -- you are so close and yet... well, may those coumadin levels be figgered out in short order!
much love and fingers crossed.
Sarah
Well, here's hoping for Monday then! Once the coumadin is tweaked, what are the chances that it will need to be tweaked again in the future? We hope this is a get it tweaked the right way and it just does its thing without being a huge pain in the arse!!
Love,
Babs, Jonathan, Naomi & Vivian
Let the tweaking get finished and the family get home and have some time together. Love you all. Grammy and Wayne
Our fingers,toes, and eyes are crossed hoping for discharge from "the prison" in the next few days! BTW, the current pic on the blog made Riley T. jealous...didn't realize Riley had a new girlfriend already!
Love, Kendra
Hoping for Monday ! At least you are in the final stretch. BTW : Nice Pic of Naomi and Riley. I have been so encouraged seeing the Riley we know and Love come back !
Joce, Tom and Naomi (PS Loved the Bingo).
I hope you guys can get home ASAP, just like everyone else does! As I mentioned in a previous post, it can take a while to get the levels of Coumadin just right. And, while I know all you want is to get home, it's better that the levels are tweaked in the hospital while Riley has the PICC line in as opposed to having him get stuck everyday, as would need to happen if he were home. Let's hope his dosage is figured out quickly! Take care and......deep breathe!!
Love,
Gwynne
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