Thursday, October 4, 2012

Urologist consult for Adam

I was expecting to go into the Urologist appointment with Adam yesterday and tell the doctor we weren't interested in any further tests at this time. The Nephrologist had indicated Adam's labs showed kidney function was fine, there were no abnormalities in his kidneys, and he doesn't have a track record of UTI's. Shannon and I were comfortable and prepared to fight for the "let's wait it out" approach because the dilitation in Adam's right kidney doesn't seem to us like it was causing a problem.

Well, so much for expectations!

The first thing out of the doctor's mouth was You probably aren't going to like what I am going to say but Adam needs a VCUG. And I responded "No, I don't like that."

That is the procedure Sara had a few months ago which requires putting in a catheter and filling the bladder with fluid and taking x-rays to see if fluid is flowing backwards from the bladder and into the kidney (reflux).

He said there is a partial blockage in the area where Adam's right kidney drains. "What? The Nephrologist ruled that out." Well, there is a partial blockage. I'm just not sure if that is the cause of the dilitation. Normally I would be willing to wait and see but I am highly concerned about the function of the right kidney. "Have you seen Adam's recent bloodwork from OSF a few weeks ago? I was told it indicated his kidney function is normal." No, I haven't seen the results but I am not convinced the function is normal. If the left kidney is fine and the right is not, the labwork will reveal it is normal and that is skewed. I am very concerned because whatever is causing the dilitation has caused the "meat" of his right kidney to become extremely thin. "This is the first I am hearing of this. The Nephrologist said his kidneys were fine."

Yep, how many contradictions did you count in that conversation? This is the joy of having 2 doctors to coordinate with and not being able to get all of us in the same room. Frustrating is an understatement. The Urologist actually pulled up Adam's ultrasound from mid August and showed me what he was talking about with the thinning. From what he pointed out, the meat of the right kidney is about 1/3 of the thickness of the left. He also showed me a line graph of Adam's Mag 3 scan. The left kidney had a red line and the right was blue. You could see the two lines running parallel with each other straight across the screen as the fluid was entering Adam's body and being processed. But when the Lasix was pushed to flush the kidneys, the red line dropped down to show it flushed but the blue line started to climb drastically uphill, uphill, uphill, until it dove downward. The doctor said that either means the right kidney finally drained on its own or the left kidney drained into the bladder and then the fluid came back up into the right kidney before it finally drained. He wants to completely rule out reflux before moving forward with any kind of surgery. If Adam does have serious reflux, he will assume that is what is causing the dilitation and the thinning. At that point we have another crossroads of deciding to wait and see if his body corrects that or move forward with surgery. If reflux is not present or is minimal, he will shift the focus to the partial blockage and consider that the problem, which also requires surgery.

I agreed to the VCUG.

Then we had to have a lengthy discussion because he didn't order sedation and that is what I wanted. He said he never orders them with sedation because it can alter the results since the urinary function isn't the same under sedation. Another conflict of information. I know someone who actually does the sedation and they perform it that way for him all the time and the radiologist performing the test says it does not affect the results. I told him everyone I talked to recommends that. Well, I don't know who you are talking to. The people in the room administering the test! Well, of course they would want sedation to make the child easier to deal with. I just want what is best for Adam and to me, that is sedation. Honestly, I felt strong-armed when talking to him. He said it was my decision but he wouldn't do it that way. We left it that I would talk it over with Shannon and make a decision.

We talked to some men who have had catheters. I talked to my friend who does sedation. We talked about our comfort level. We are doing the sedation.

The Urologist and Nephrologist have their monthly joint meeting on Monday to discuss patients they both see. I spoke with the nurse this afternoon and she will be at that meeting and will bring my list of concerns regarding the conflicting information. Sure wish I could be at that meeting!

I am wired to seek out consistent data and not rest until I get it. I am wired to ask questions until I understand.

I am also wired to be a mom, which means I will fight for my kids until my last breath. Another example of an instance where I am their best advocate!

Let's end on a lighter note, shall we, now that I am all fired up!

This was the totally cool exam table at the doctor's office. Honestly, the best part about the visit! It kept Adam busy for 20-30 minutes! I think it would make a great idea for a toddler bed if we turned it into a fire truck and made a ladder on top for a bed rail!

1 comment:

Heather said...

How unbelievably frustrating!!! I'm getting mad and it didn't even happen to me. I hope you get some consistent answers soon.