Will's First Appointment at Centers for Children

Last week Will had his fourth ultrasound of his kidneys and bladder.  The first was done when I was still pregnant and they first noticed that his kidneys were enlarged.  Then he had one done the week he was born, and then they re-checked it again when he was about 6 weeks old.

All that to say, we've known that Will had enlarged kidneys since I was pregnant.  We were told that with most babies, it goes away by the time they are born (and OB's and pediatricians see lots of cases so it really wasn't anything that worried us).  Throughout my pregnancy, I trusted my doctor and really did not worry about it too much.  And then when we were in the hospital after he was born, we found out from doing the ultrasound that rather than improving and going away, the condition had worsened.  Then we got the same news after his third ultrasound.

The doctor today said the condition has continued to worsen; however, he only had the reports from Will's ultrasounds to compare back to.  He hasn't actually taken a look at the actual ultrasound pictures.  (Apparently, most parents get those pictures on a disk that they bring with them to their appointment...we never got one, so we are going to get one from our pediatrician to give to our urologist).  Once he has those, he will be able to make better comparisons about the degree to which Will's condition has actually changed.

So what did we find out today?

1.  Will has what is called "hydronephrosis," which is the swelling of the kidney due to a back up of urine.  It is on both kidneys, and on a scale of severity from 0-4 with 4 being the worst, his ranks at a Grade 2.  His left side appears to be worse than his right side, but overall his kidneys do look healthy from what he can tell.  In addition, he was very happy to hear that Will has good function (he pees with force and has a steady stream of pee...both good things! Woohoo!)  Most children with this condition grow out of the condition with time, but some do need some type of treatment.   The prognosis is very good though, and this is not a life-threatening condition at this point.  Will is not in any pain, but we really need to figure out why there is a problem to prevent it from getting worse.  That is the main concern.

2.  Like I said before, the doctor will compare last week's ultrasound to the others to get a better picture of Will's progression.  We also need to do some additional testing to figure out WHY this is happening.  There are three main things that they are looking for, and the tests will help rule out some of the more severe issues versus a more basic issue.  Basically, he wants to rule out everything that he can to pinpoint exactly what is going wrong and not miss anything that could potentially be much worse if gone untreated. 

3.  We will go to Children's in Little Rock to have the tests done.  In one test, they monitor Will's urine flow as he pees (that does NOT sound fun does it), so he will need to be sedated for that one.  They will also run some additional tests to check how his kidneys are actually functioning (which they cannot tell from an ultrasound).  We will meet with this same doctor that day in Little Rock afterwards, where we will get results and then make a better plan once we have all of the information.  Once we get definitive results after going to LR, I'll update you with specifics.  The doctor we saw was just so kind and helpful, drawing pictures and explaining things so slowly and articulately.  I am very grateful. 

4.  He said the plan could range anywhere from from simply monitoring his kidneys for the first two years of his life with ultrasounds, to more testing, to a surgical procedure to fix an obstruction.  We will find that out when we go to Little Rock.

How can you pray for Will (and his momma and daddy)?

-We would love it if you would pray that this condition would go away on its own.....if we did the testing in Little Rock, and they found no problems, that would be awesome!  I know God doesn't always answer our prayers exactly that way, so you can also pray....
-That we can get in quickly and easily.  (They want us to get this done within the next month).
-That we have peace as we wait for more testing.  Will is the most patient of any of us :-)
-That the testing process would go smoothly for sweet Will (no problems with sedation, no complications, etc)

Thanks so much everyone, and a big thank you to my parents for going with us to the appointment to be another set of listening ears to listen and ask good questions.  I have watched Matt and my parents be my advocates at appointment after appointment, so they are true experts on listening and asking good questions.  It's an honor to be Will's mommy, and I'm so thankful for the great care we have received for him already.  We have such a peace after this appointment, knowing that God is going before us and has this all figured out. 

In the waiting room...

Getting his vitals

Such a happy and strong boy as he waits!