Wednesday, March 25, 2009

The Plan

After doing some of our own research via webmd and other online sources, we think we have come up with a plan for securing appropriate medical services for Nolan. The urologist (who only treats adults) gave us no information, other than mentioning the obstruction might be PUV. His plan is to simply monitor bladder volume and do no other diagnostic testing. The research I've done shows that:

  • Most boys with PUV are diagnosed in utero, but mild cases may not be discovered until early childhood with a weak urine stream and a failure to obtain control over bladder function (failed toilet training).
  • If untreated, PUV causes a thickening of the bladder wall. In addition, it can cause urine to flow into the kidneys and can cause renal failure.
  • All cases of urethral obstruction (in boys) are assumed to be PUV until proven otherwise.

Because the effects of PUV are so severe, even in mild cases, we must see a pediatric urologist to verify this is the cause of Nolan's problem. The diagnostic standard is a VCUG, the same test Nolan was originally scheduled for. Unfortunately, they won't be able to do this test because his blockage is too severe. Another method exists, which involves a scope under sedation. If he does have PUV, there is a simple surgical procedure to ablate the valves and prevent later complications (such as urinary incontinence and kidney failure).

The radiologist at our local hospital asked us if we had noticed a normal, strong urine stream. Which made me think: I have never seen him pee! With my older child, we had gotten a wet surprise during more than one diaper change. That's never happened with Nolan. I thought I was just really good at diaper changes, but it turns out that may have been the first symptom that something was amiss. We'll find out later, I guess.

We have an appointment with his pediatrician on the 30th to get shots and to request the referral to the pediatric urologist. The questions I have written down for her include:

  • Are we absolutely sure there really is a blockage?
  • How can we be sure without an appropriate scan?
  • How likely is this to cause future problems?
  • What problems can this cause?
  • Wouldn't it be better to correct it now, rather than waiting until he's older?
  • How will this affect toilet training?

While I've looked up the answers to many of these questions, I still want her input. And since we were not referred to the appropriate testing facility (the children's hospital), we have no scans which show the location and cause of the blockage.

In the meantime, we are reassuring ourselves with the fact that his kidneys are thus far unaffected.


2 comments:

Shannon said...

So sorry you are going thru all this - thinking good thoughts for you and Nolan!

Herding Grasshoppers said...

Leah,

You're doing great. Good questions and a good plan.

Thankful his kidneys are well thus far,

Julie