Monday, March 23, 2009

What Do We Do?

Note to doctors: when a parent asks you "what should we do?" the correct answer is not "that is a philosophical question."

So, here's the rundown:

  • Nolan's renal ultrasound is normal. His kidneys are healthy.

That's the good news. The bad news is:

  • Experienced nurses could not get a catheter into his bladder.
  • The radiologist couldn't get any imaging done.
  • He has a urethral obstruction.

We were sent to a urologist (not a pediatric urologist) because of the blockage. We asked him what was going on, and he told us, "well, he has a blockage." Duh.

The doctor asked about how far in the blockage was. I told him about an inch, but we don't have any imaging to show the location or source of the problem. I asked him what could cause it, and he said that some boys have posterior urethral valve obstruction. We don't know if this is the cause of Nolan's issues or not.

We totally found this by accident, since we were screening for ureteral reflux because of my history and Nolan's low weight. Of course, we won't know if he has ureteral reflux because we can't test for it due to the obstruction. On the other hand, his kidneys don't show any signs of hydronephrosis yet, so we are just going to watch and wait.

The blockage is very real, but we don't know the severity. He still has wet diapers, so that is a good thing. On the other hand, they had no problem catheterizing him at the age of 8 weeks for a routine urinalysis (part of the standard congenital hearing loss work-up). So it is possible that the blockage has gotten worse as he's gotten older.

Our conversation with the urologist went as follows:

Us: What should we do?

Him: That's a philosophical question. What do you want to do?

Us: We don't know. What should we do?

Him: Well, you can do everything. Or nothing.

Us: If we do nothing, what can happen?

Him: He could get end stage renal disease.

Us: How likely is that?

Him: I don't know. What do you want to do?

Us: What do you recommend?

Him: That depends on what you want to do.

ARGHHHHH! I just want a concrete plan of action. I don't want to do needless tests, but I also don't want Nolan's health to be in jeopardy.

We settled on doing monthly bladder scans to make sure his bladder is emptying enough to prevent hydronephrosis and kidney damage. His bladder scan number today was 24. Anything above 50 is considered a problem. We also have to keep a sharp eye on him- if he stops wetting his diapers it is a medical emergency.

For the long term, I just don't know what to do. Do we request a referral to a pediatric urologist? Do we do a scan to find the cause, severity, and location of the problem (this is highly invasive under sedation)? I just wish the answers were more clear-cut. Mr. adult doctor wouldn't really give us his opinion.

We are going to talk to his pediatrician again, and I want to write down some questions to ask her. If you have any question suggestions, I'd be grateful. I wasn't expecting to find this problem, but now we have it and have to make decisions. And we just don't know what to do!


Lucas'Mommy said...

Hi Leah, I'm so sorry to hear about this. I would definitely go to see a pediatric urologist. I think he/she would have a better idea about the issue in kids. And it sounds like this doctor has pretty poor bedside manners. Of course you want good, sound advice and not rhetorical questions! It's especially tough when your making decisions for your baby, and not even yourself. I hope the answers come to you. I'll be thinking of and praying for you guys.

Julie said...

Is there a Children's Hospital in your area? If it were my kid, we'd be on our way to Seattle to see a specialist.

I'd at least want to talk to someone who had a clue along the lines of, "Here are some options...", not "What do you philosophically want to do???"

Good grief! That guy sounds like the 60's were far too good to him!

Julia said...

The conversation you narrated would be hilarious if were on TV, but not when it's your kid! Is there no way to image the blockage without the invasive procedure under sedation? Would an ultrasound work?

You should probably ask what, exactly, are all the possible outcomes and their likelihood. I'm guessing the pediatrician won't have that kind of specialist knowledge, but can perhaps give you some sort of meaningful response and you can then look up more detail on the web. Speaking of which, have you read about this on webmd?

Pattie said...

Leah, I agree with both ladies about the Children's Hospital and a pediatric urologist. I am so sorry that you have yet another thing to worry about with little Nolan. But, on a positve note, you have the info now and will not be faced with "end stage renal disease" out of the blue. What causes this, did he say? I am so sorry that you guys have yet another thing to deal with. Sending you h-u-g-e ((HUGS)) from Chicago.........

Drew's Mom said...

Oh, I'm so, so sorry you are going through this. I pray for fast answers so that you can be at peace with the decisions you will need to make.

rubi said...

Hi Leah
sorry to hear your going through this now, heading over to your local childrens hospital is defin. a good choice. additionally there should be a much simpler way to image the blockage without the invasive procedure under sedation. do some research online- there's loads of info out there.
wishing you the best of luck!
praying for you.

Julia said...

I just followed your link about PUV. One of the diagnostic techniques listed there was an abdominal ultrasound. (I'm guessing that the endoscopic ablation is the invasive procedure that you're hoping to avoid.) Maybe you could push for the ultrasound. Anyway, I'm sorry you're having to deal with all this -- must be very stressful.

Anonymous said...

Hi Leah, I too am so sorry to hear this news. Poor little guy needs to get cut a break! I hope you get some much needed answers soon and that Nolan starts to feel better.

Kimmy K said...

Leah, I've been following your blog for a long time now since our kiddos seem to be in similar situations. I am an RN and I think you really need to see the pedi. We have had bad experiences with adult docs for our son and I have kicked myself for not getting the right doc before. If it comes down to it, invasive procedures suck while they are happening, but in the long run if it fixes the problem Nolan will be better off. I say see the pedi and get a second opinion!

Here It Comes said...

Too bad you don't live in Houston. Emmi's doc is great. Luckily, Emmi has not actually had any real issues, other than a few minor infections. We actually didn't even know she had a kidney/bladder issue until we had the whole work-up before one of her CI surgeries.

Hopefully you get into a pedi doc soon. I know ours has done great job balancing between not running too many tests, but keeping Emmi well monitored. Hopefully, you are able to find someone like that.