Unexpected

First off, thank you to everyone who called, messaged, texted or sent care packages, Lisa, Ethan and I cannot thank everyone enough.
As most of you know, Ethan went to Riley on Tuesday to have a surgical test performed called the Whitaker Test. This test was to determine if there is a possible blockage in the left side of his urinary tract post-operation. The test has two parts, a resistance test (that tests for the blockage) and a contrast (dye) test.

This part of the post will be confusing so I will do my best to describe in detail so everyone can follow.
Ethan passed the resistance part of the tests which means he did not have anything in his urinary tract contributing to a blockage (scar tissue, swelling, etc.), which also means that his surgery in March was a success.

The second part of the test, the contrast, did not go so well. Ethan’s left kidney has so much fluid in that when they put the dye in the kidney it diluted and they could not get a clear picture of the upper part of the ureter that connects to the kidney that is still distended (loopy). So you might ask, I thought Ethan’s last surgery was to repair his ureter? His last surgery repaired the bottom half of the ureter but not the top half of the ureter. His urologist said that you never want to repair the whole ureter at once because you never know where the blood supply is and there is a risk of killing it. His doctor believes that since the lower part of the ureter is flowing faster than the top part of the ureter, one of the “loopy” parts is “kinking” every now and then, slowing the flow. Confusing and scary, I know.

So in order to get a better look at the upper part of the ureter, the doctor inserted a nephrostomy drainage tube into Ethan’s left kidney. This is a tube that is draining all of the fluid out of Ethan’s kidney. The tube looks like a catheter but is coming out of Ethan’s back!! There is a lot more maintenance involved with this, dressing changes, flushing the tube, oh yea, and making sure it doesn’t get caught on anything as Ethan jumps off the coach to land on the dog, he is almost two you know. But the hardest part of all is no swimming!!! As everyone knows, Ethan is a fish, so we had to tell him that our pool and grandmie and jaja’s pool are broken.

So what does this all mean????

We will go back to Riley in two weeks to have another Whitaker test and wait for results, but after talking with Ethan’s doctor, he is setting up a meeting with the whole radiology team at Riley to look at Ethan’s results. He told us more than most likely that he wants to go in and repair the upper half of Ethan’s ureter, so that Ethan’s left side will look just like his right. So, big picture of Ethan’s future, Whitaker test, Surgery, Stint Removal, VCUG , all within the next couple of weeks!!!

Can our baby ever get a break and just do what a “normal” two year old is supposed to do. Yes, we are very fortunate that Ethan only has a mild case, and yes it could be a lot worse, but daddy’s and mommy's heart just breaks every time we get into the car and tell Ethan we are going to the doctor and he looks at me and says, “No hurt daddy, no hurt.”

As we all wipe the tears from our face, the good news in all of this is that there has been no damage to the kidney so far and that is why the doctor wants to do the surgery, to prevent any possible damage.

And you all must also know that Ethan is still the happiest baby in the world and does not let anything slow him or get him down. This is just one more hill that our little guy must climb so that he can go on with a normal healthy lifestyle.

 

(Pictures from last week, before we left for Riley Hospital)

                                                                                    
Ethan would not be able to climb his hills as fast as he does if it was not for his wonderful friends, family and doctors (Dr. Moustafa and Dr. Kaefer). Thank you everyone once again and please email us with any questions. Love, Nathan