Sep 28, 2010

Getting to Know Jacob

I know many of you know the story of Manny ... but you might not know the story of Jacob. So I'll start at the beginning and end up with today's news.

Jacob was born July 7, 1998 a wee bit early and drug addicted. His birthmother gave birth to him at home and took him to the hospital and said she wanted him to be adopted. 18 months later, we met him and knew he was our son. He could barely walk (always on tiptoes), didn't talk and wouldn't look you in the eye. He acted like he was deaf even.

After many, many, MANY Miracles, Jacob learned to talk. It was discovered much later that he is on the autistic spectrum, some say Asperger's Syndrome. He's a hilarious, gentle giant. At just 12, he's already 5'8", 135 pounds, wears a size men's 11 shoe (like Daddy). He loves to read - he has a photographic memory! And this year he is in 6th grade (homeschooled).

On his 12 year check up, the doc ran a routine urinalysis and it came back with problems. Long story short - many urine tests and blood tests later ... still problems. So we were sent to the Nephrologist. And that takes us to today.

Kidney ultrasound showed 2 anatomically normal, functioning kidneys. (Good news.) And then the Nephrologist proceeded to explain the test results (which she had already studied). "The lab results are highly concerning."

Basically you should have 30 or less parts of protein in your urine. 100 is a problem. His is almost 3800. By itself, it's still not a huge deal. But his blood tests show he has basically no protein in his body (which explains why he is weak, tired a lot, fatigues easily, and is losing weight rapidly). So it shows his kidneys are working over time. Secondly, his liver is trying to help out ... thus his cholesterol of 294. It's not a true choleserol like you usually think of it but a byproduct of the kidneys not filtering correctly and the liver working over time too.

Anyway ... all together this is called "Nephrotic Syndrome". But there are several types. Some that are relatively mild and respond well to treatment. One that doesn't.

So given his age, gender and race, there is one likely suspect of what is causing this ... and the doc (who has been a Pediatric Nephrologist for 30 years) suspects it's the one that doesn't respond well to treatment. But she kept saying ... we won't know until the biopsy.

Which is the next step. It was too late today to schedule it so we'll call tomorrow ... she wants it done next week. It's a one night in the hospital stay with results in about 1-2 weeks.

Once we get those, we'll know if/what the treatment plan is. If it's the one she suspects, she went on to tell me that End Stage Complete Renal Failure is in about 5 years (give or take) before transplant. NOT words you want to hear about your precious little boy.

In the meantime, we're asking for all the prayer warriors to rally the troups. God has saved this little guy more than once and we KNOW He is going to do it again!! So thanks for joining us in prayer. In fact, as we heard the news, THAT was the first thing Jacob asked ... "Can you tell everyone the news so they can pray for me?" So I'm doing just that!

1 comment:

  1. It will be an honor to pray for Jacob. Thanks for giving the opportunity to do so.