"If you are born with a heart defect, this is the one to have."
I can't count how many times we have heard this sentence since Knox's initial diagnosis. Everything we read about his condition was pretty straight forward. Transposition of the Great Arteries: 95% success rate, pretty quick recovery, normal life after the procedure. In. Out. Done.
And it's true.
The only problem with prenatal diagnostics is everything is so small that it makes it difficult to get a good idea of what is really going on. By the time Knox was ready for surgery the doctors identified some additional problems with his heart. He also has a Ventricular Septal Defect (VSD), an aortic arch that curves to the right instead of the left, and mild regurgitation of the tricuspid valve.
While none of these things alone are a huge problem, the combination has created a problem that can't be fixed easily. The type of Transposition he has (D-TGA), along with the patch they had to make to close the VSD pulls on his tricuspid valve in such a way that his regurgitation (the leakiness) has gone from mild to severe. And that is the cause of all this fuss.
One Stupid. Little. Valve. A valve that is too small to be replaced (he would have to make it to 5 yrs for a replacement), and too complicated to repair. The doctors have essentially scanned his entire body (and continue to do so), searching for ANYTHING else to explain why he can't tolerate the leakiness (most babies don't have a huge problem and grow out of it) but have found nothing. They are completely stumped.
About two weeks ago, Jeremy and I had a conference with all of the doctors involved in Knox's care to discuss a path forward. The only solutions we can come up with (so far) are to bypass the valve completely (essentially living with a 3 chambered heart), or get a heart transplant. (Of course, there is always the hope that he will miraculously heal to the point where he wouldn't need any procedure at all.)
In order for him to be considered for either of these procedures he needs to be at least 3 months of age, and hopefully get a little healthier during that time (due to the medications he's received, the trauma from his surgeries (he's had 2 so far), and the passage of time in the ICU, his kidneys and lungs are getting sicker).
The doctors have now told us that the chance of him not making it is greater than the chance that he will make it, and although they haven't given up hope, have officially given us the right to say enough is enough, if we feel that Knox has been through enough. Heavy stuff.
So the question is, where do we go from here?
For now, we wait.
We wait until July 24th and see how he is doing. We wait to see if he wants to stay on this earth, or if he is ready to go home. And in between the waiting? We pray. We love. We spend time together.
And we don't take for granted one single second that any of us have on this earth.
5 comments:
I've been following Knox's journey through a mutual friend, Ty Mulholland, on Facebook. I just wanted to say I'm praying extra hard for him. Our daughter was diagnosed at 4 months with Atrial Septic Defect (ASD) and pulmonary valve stenosis. She had surgery one month later. It was devastating, but God has been very gracious! Tomorrow, on Independence Day, she will turn 8!! :) We're praying for all of you!
I truly respect u guys for sharing ur family with our family. Love u guys, Knox especially. Ur friends, The Villas
I read your blog from a link that was posted on FB by a mutual friend Lisa Steele. I have a 17 year old son that was born with the same defect and a few others to boot. He also had the surgeries and now lives with half of a funtioning heart. I have been in your shoes and walked you path and although it was 17 years ago it seems like yesterday. My prayer for your familiy is that God would give you "peace that passes all understanding" he did that for us and it pulled us through the darkest time in our lives. God's love is so overwhelmeing even in darkness. I will be praying for your family and your little guy Knox. I don't know you but I know your path and I will pray that Gods overwhelming grace and mercy will guide you and sustain you. Thanks for sharing.
Debbie Jackson.
Hi Zohn family! I first heard your story through Pastor Matt at NVC when my husband & I started attending there. I follow your updates through FB friends. My daughter was born with VSD. Praise the Lord, she is turning 16 next month. I remember the fear all those years ago yet cannot imagine what you are going through today. Your story has deeply, deeply touched my heart. I, among many, have fallen in love with you & your boys. I want you to know you are not alone! We are bound together, holding your precious little one up in prayer. ~The Johnsen Family
God brought my little girl through a heart transplant at 3 months old. I'm praying he will do the same for your baby.
Post a Comment