Pediatric Nephrologist

Sorry it took me so long to write this post.  It's been a bit rough around here, but I'll get into that later. 

On Friday, we met with Dr. Barletta at Phoenix Children's Hospital.  Dr. Barletta specializes in pediatric kidney problems.  Although we didn't learn too much new information, we walked away from the meeting feeling more confident in Kenton's possible treatment.

Dr. Barletta said that we are well ahead than most are with Kenton's possible diagnosis.  Often times, children with congenital nephrosis aren't diagnosed for at least a couple of months after birth.  The fact that we know that he could potentially have this disease means we can treat immediately and hopefully fend off serious complications for a while.

She then went on  to explain more about how someone has congenital nephrosis.  It's all rather complicated, but the gist is that we know that Kenton has one gene that is a carrier for congenital Finnish nephrosis.  That recessive gene, if combined with a couple of different genes, could cause congenital nephrosis.  There are several genes that could cause this and we have tested for a few of them, but not all of them apparently.

When Kenton is born, the NICU doctors will test his urine to see if he has an excess amount of protein.  If he does and he tests positive for congenital nephrosis, we will then be transferred to Phoenix Children's Hospital so we can begin treatment right away.  However, there is a chance that nothing will show up for a few days because he hasn't fully functioned on his own quite yet.  Within the first week, we will go see Dr. Barletta (if he tests negative in the hospital), just to follow up and re-run tests once his body has to process on its own. 

If Kenton does test positive, it will be a very rough year or two.  We will likely spend a lot of time in the hospital getting treatments.  Once he is roughly 22 pounds, which could take a while due to malnutrition, he is eligible for a kidney transplant.  At this point, they would be looking for an adult donor.  If the kidney takes, then Kenton is cured and will no longer have nephrosis.  However, the lifespan of a kidney is roughly 15-20 years, meaning that he would need quite a few transplants in his lifespan.  We also received a handout giving an overview on congenital nephrosis.  I was going to scan it in and copy it, but Wikipedia has pretty much the same information here.

So, that is the gist of everything.  We, of course, continue to pray that Kenton is completely healthy and that there is no reason for the protein in the amniotic fluid.  I believe in a God that heals and know it is possible.  I also have faith that He has a plan for us.  Whatever that plan is, please pray for strength for us all and that we can be living testaments of God's power and love.