Ivan.
6 years old.
Single atrium/single ventricle.
Can I be blunt for just a minute?
Yes?
Ok.
Let me lay it all out there.
Without intervention he will die a very slow and miserable death.
Slow.
Miserable.
Death.
Moreover
he
will
be
all
alone.
Please.
Pretty-pretty-pretty please
someone
give this boy a home
give.
him.
life.
According to Joshua's {incredible} cardiologist Ivan will need the two part Glenn/Fontan surgery.
They are typically done a few months to a year or so apart.
After that, he should be good to go for a very, very, verrrryyyy long time.
Thus scenario 1 for him is the Glen/Fontan. These kids go on to lead normal lives despite the fact that they are basically functioning with only half their heart.
Which....
hello.....
amazes me.
Scenario 2 is if his ventricle is initially too weak for the surgery there are some medications they can put him on to try and strengthen it and then operate.
Scenario 3: His ventricle will not be strong enough despite medication in which case he will need a transplant.
His official file mentions some pulmonary valve stenosis but in the words of Joshua's nurse,
"that's the least of his problems." His immediate need is the Glen/Fontan.
Want to know more?
Watch this.
And read this
The Glenn and Fontan Procedures for Pediatric Patients
His life depends on it.
In case you missed it or want to hear my thoughts on taking a chance on these kids with more severe diagnosis you can read this
The Terminal Child
Anybody whose kiddo has had this surgery combination or has a child with Single Atrium/Single Ventricle please feel free to leave your experience in the comments in hopes that it will provide more insight into what a family can expect with him.
Rally the troops
circle the wagons
spread the word
link it up on the book of face
let's get this boy a family!
Shoot me an email at mommyof4jays@msn.com for more information.
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We have scenario #4 which is inoperable with basically the same anatomy. With medication, I cannot believe the difference in the quality of life for our Joshua. Quite frankly, he was suffering in China fighting the elements, the basic care, the nutrition. Slow, miserable and painful is about right. Today, he has no need for oxygen. He runs, he plays, he loves and is LOVED.
ReplyDeleteMy son is not adopted, he's our biological child and has this exact heart condition. Our child's condition is called Tricuspid Atresia. He was diagnosed in utero and had the first surgery (the Glenn or also called the Hemi-Fontan surgery) at 4 months of age. His second surgery was at age 2...this was called the Fontan procedure. Both surgeries were completed at the University of Michigan by Dr. Edward Bove...a very talents surgeon! Our son is very active, athletic, and always on the go! He is now 8 years old and only takes one children's aspirin per day. We're told by his cardiologist that he will eventually have sports restrictions for high cardiovascular activities and/or contact sports, but at this point in his life, he can and does do everything all the other little boys his age can do. If anyone needs or wants more info. about these two surgeries, feel free to email me and I'd be happy to share more. sjbeckham@hotmail.com
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