Another half day spent at the Children’s hospital today..
First thing was the ultrasound at 8am… Wilhelmina is amazing as always, she went into her “hospital mode” and laid quietly and still as the technician checked both of her kidneys and her spleen… while we waited for them to tell us that we could go I talked with three other families that were also there for kidney problems, though they were many months/years post surgery and the problems were not the same and we were able to share our stories and it felt good to talk to some people that have been trough it…
The ultrasound showed that the inflammation had gone down quite a bit in the last few weeks and there is scar tissue and though there is still some inflammation it is a lot better than it was which means the nephrostomy tube is doing its job.
The next test was the nephrostogram. The big machine was a lot more intense then the ultrasound wands, so Willa was visibly not happy, but even so she remained completely still throughout the test as I held her hand and comforted her, it also helped that the radiologist was amazing.
The nephrostogram is done in the radiology department and a contrast agent is inserted into the port in her nephrostomy tube which leads directly into her kidney… The fluid then shows up on the real time X-Ray video. This test was done so that they could see where exactly the obstruction is in her ureter. Up until now it was thought that the obstruction was at the utero-vesicle junction, however, the test showed that there is actually a segment about 1.5 cm long near the bottom of the ureter but above the junction that most likely never formed well and is so much smaller in diameter that no more then a trickle of urine can pass through it. That causes a backup in the urine and therefore dilates the rest of the ureter and kidney. It is not 100% obstructed as we thought but it is also not functional and most likely has never been.
After the test we headed down to the urology clinic to meet with the urologist and have he bandage changed and the site inspected.
So basically what the urologist explained is that now that we know the anatomy, the next step is the DMSA test to figure out how well the kidney functions. If her function is above 20% they will do the reimplantation surgery in which they will cut out the section that is malformed and reimplant it into the bladder. If the function is 10% or less they will take the kidney out altogether. And, if it is in the in-between numbers it will be up for discussion.
So that is where we are now… The next test in another two weeks and then we should get the results the week after. Usually the nephrostomy tube doesn’t stay in for so long but she will need to keep it in until surgery which will be decided upon when we know know just how well the kidney actually functions. The tube is a pain but it is a necessary evil.
So now, More waiting…but I am finally starting to see the pieces fall into place and the options of what to do next are getting slimmer… It actually feels quite good.