The waiting is finally over and we had our first pediatric nephrology (kidney specialist) appointment yesterday. First, let me say I am thankful that I only have to drive 15 minutes to get there. Others in the waiting room had come from 1-2 hours away. Children's Hospital of Illinois is a great resource and to have it in our own back yard is an even bigger plus.
Adam is the easier to discuss so I will tackle him first. We were originally told that Adam had severe calcifications in his right kidney and that is incorrect. That makes me feel a little better, like my eyes weren't deceiving me, because I know his renal ultrasound looked nothing like Sara's. Adam's kidneys themselves are normal and formed properly. His ultrasound did reveal that he has some dilation in the collective system of his right kidney. It could be something or it could be nothing. Dr. Gordillo wants to rule out an obstruction, which is more common in boys. Next steps are labs for a urine analysis and blood work. If the urine analysis has abnormalities, we will go a step further and do more in-depth testing. They also need to schedule a procedure called a Mag 3 Scan where they will inject dye thru an IV and do something like a CT scan to take pictures of how the dye flows thru his kidneys. If it pools at that collection point then there is a blockage that would require surgery to correct. This is scheduled for September 4. Happy birthday to me!
When Sara was scheduled for her procedures I wasn't really worried about it. I knew she could handle it. But Adam is more tentative and skiddish. Things scare him more easily. Even tho he has a high tolerance for pain, he is more tender than Sara and my favorite snuggler! So I definitely have a concern about how this will go. I see a visit to the hospital with his favorite blankie at his side as part of the day!
Now on to my baby girl, which brings tears to my eyes to even say. Dr. Gordillo confirmed that Sara's calcifications are indeed kidney stones and she has 2 large ones in each kidney. He feels they were probably formed because of her UTI's. At this point they are not obstructed so it isn't urgent to do something with them. She will have a full blood work done, some urine analysis, as well as an in-depth 24 hour urine collection where we have to collect everything she pees during her waking hours in a 24 hour period and send it off to a lab. Hopefully the results will reveal more about the kidney stones and what they are made of so we can further determine a course of action.
At this point Shannon and I were thinking we would wait a few years and see if her kidney reflux got better, get rid of the stones, and then we would have everything behind us. I learned yesterday that is not how it is going to happen at all. Dr. Gordillo brought the news to the table that a portion of the inside of Sara's kidneys did not fully form, possibly in-utero. Her cortex (an inner layer of the kidney) is thinner and the differentiation is not well seen in the ultrasound. This puts her in the category of having chronic kidney disease that will require follow up with him every 3 months indefinitely.
Sara has enough kidney tissue for now and the goal is to take good care of what she has. We will be monitoring her blood pressure, her growth rate, and her urine output. Any abnormalities in those areas will indicate the kidney function is diminishing. As she grows, the kidneys have to filter more and work harder. There are some "sacs" inside her kidneys that do that filtering and as she grows, the sacs that are there will need to work harder. Some kids do fine with that and others don't so we will just have to keep up with the monitoring and see how her body reacts.
And so we wait. Again. Once these lab results and other tests are done, Dr. Gordillo will review them and contact us as to next steps.
If you are a praying family, pray simply that God heals it all.