Due to getting her fourth UTI, Hannah’s VCUG was moved up to June 21st. To everyone’s surprise, it came back normal. Hannah does not have urinary reflux. She has finished her antibiotics, and is currently UTI free. We have a follow up appointment with her Urologist scheduled for July 13th. I’m not sure what to expect, but he said he doesn’t want any other testing done before Hannah is seen. I’ve been told that prophylactic antibiotics are a good possibility, so we have been contemplating that and trying to find out what our options are so that we can go into our appointment as prepared as possible. There is a possibility that Hannah’s chronic constipation/diarrhea is the cause of her chronic UTIs, so we also had a few tests run in the GI area as well.
Hannah’s blood work came back negative for celiac disease, praise the Lord. With one out of every 10 people with Down syndrome having celiac, I was concerned we were going to be gluten free for life. Thankfully, as of right now, that is not the case. Hannah also had a water soluble enema performed last week to check for hirschsprungs disease. Children with Down syndrome are also much more likely to have hirschsprungs than typical children, so this was also a concern of ours. Thankfully, that test also came back normal as well. The x-rays showed she was moderately constipated, so we have started a short clean out in the hope that “resetting” her bowels in a sense, will stop the back and forth between constipation and diarrhea. The clean out is one of the worst things we have had to do thus far, but we are almost done with it!
On a side note, during the enema, the radiologist noted that two of Hannah’s sternal wires from her heart surgery are broken. I called cardiology and their plan is to keep an eye on them, but they said it isn’t uncommon, and broken wires usually don’t cause any problems.
The frustration of still not having any answers to Hannah’s GI and urology issues is very real, but we are putting our trust in the Lord, and will take what He gives us, even if that means we never find the cause. We are hopeful getting her GI tract cleaned out will solve both problems, but only time will tell.