Children's Memorial...Day 2

Thursday addi had her X-ray with barium and abdominal ultrasound.

She was such a trooper during the X-ray and drinking the barium. I had to put on one of her favorite songs but in the end she handled it like a champ.

She thought the u/s was the coolest thing ever. It may have been that she was finally able to eat and drink or just seeing the things on the monitor, either way, that probably was her favorite test.

It did not go so well though. When the tech put the probe on her kidney I knew in an instant something was wrong. It was huge. And there was a black mass 3/4 the size of her kidney in it. There were also little cysts as well. I know what they look like since I have PKD and (use to) get u/s often.
I could tell the tech looked worried too. BUT she didn't show it though. So we finished up and she went to talk to the radiologist to make sure we didn't need any more pics. He said the pics were good and we'd have the results by days end.

{Right kidney...}

Let's just back up here. Dr. C ordered the u/s to check for an UPJ obstruction. In this type of obstruction, something is blocking the ureter from the kidney to the bladder. Turns out there is a blockage. The tech said we'd probably see a nephrologist and get more tests done but since she's not the dr she couldn't be 100% certain.

This is just another reason why I absolutely love children's memorial. Everyone there is so incredibly nice and actually cares about the patient and their families. Techs here wouldn't have answered my questions at all. The radiologist doing the X-ray actually straight up told me things were 100% clear. Love. This. Place.

Back to addi. I called today to get the results of her blood tests. Everything is coming back normal. Her creatinine level was .2 (perfect) and her urine was clear. The celiac test takes a week but the markers came back clear. The GI nurse wants her to see a urologist for the cysts. She has the huge cyst on her right kidney and multiple other ones on her left and in her renal tubes. Why not a nephrologist, I'm not sure. So that's what we are doing. Thursday 5/31 we will be back up at CM to meet with a urologist. When I spoke to dr bishop today (dr at associated peds-her primary drs), I got the impression that we are seeing the urologist for surgery. So we will see. I don't think she has PKD. I could be wrong. I don't think they really know what she has. But I know if it was life threatening they would have done emergency surgery. So for right now I'm just (anxiously) waiting until Thursday to get some answers.

The endoscopy is schedule for June 25th at the new CM in Chicago. She will be knocked out and also have the ph study placed at the same time too.

I've also stopped all of her meds and she hasn't thrown up since the weekend. She hasn't said her throat has hurt since Tuesday. The kidney issue and the acid reflux are not connected (that I know of), it's just a blessing in disguise that it was found.

I'll get the results of the celiac test tuesday but I'm sure they are normal.