Last Thursday, Judith and I had a long day at Hershey for some of her follow ups. The main reason we went was for her 6-8 month check for her kidneys to monitor the necrocalcinosis. But because of her recent hospitalization, her CF team wanted to make sure that she wasn't backing up again and ordered another abdominal x-ray. I told them that we were already coming for this appointment, so they were able to send the orders to the lab so we could have the scan done the same day. I knew it was going to lead to a long morning of appointments (and basically a long day period when you count the drive), but it was much easier to do everything at once rather than making multiple trips.
Our morning started with an ultrasound on her kidneys. I wasn't sure how Judith would react, especially since we had to go into the children's hospital to get to the pediatric radiology department, but she was surprisingly chill as we walked in and checked her in. Even during the actual scan she cooperated relatively decently. I was able to keep her still enough this time, and we didn't need an extra person to help restrain her so they could get the shots they needed. While we were in the department, we did the abdominal x-ray, and that was a little more traumatic for her, but at least it was over quickly. We then had about an hour to kill before her appointment with the doctor, and I was glad that she was content with my iPod and watching Sofia the First while we waited.
One of the neat things about PSHMC is it's a teaching hospital, so every now and then med students sit in on and participate in appointments. Thursday was one of those appointments, and Judith was examined by a med student first, and then examined by the actual doctor. I was proud of her that she was really good during the med student's exam and didn't pitch one of her more common fits. Anyway, the renal specialist also checked Judith out, and both the doc and the med student said everything sounded good. The doctor was able to read the ultrasound pictures, and the good news is nothing has changed! She said that the ultrasound pics from a few months ago are practically identical, and they want to see that or improvement. If the necrocalcinosis would've gotten worse, then we would have a problem. We go back in a year for another check, and she said that if things still haven't changed (or if they start to improve), they won't need to see her again and will discharge her from their team. Yay!
That was the high point of the day. The bad news is we're right back at square one with Judith's GI issues. Even though we've been giving her the miralax regularly like Dr. G. wanted us to do, her x-ray showed a moderate amount of buildup, and she was full of poop again. When I called the team to see if they had her results and they told me what they saw, I was worried they would readmit her to do a flush with Go Lightly, but they wanted to try flushing her at home instead. Her team's really good about trying to keep the patients out of the hospital as much as they possibly can, so while I was trying to figure out the logistics of dealing with tons of poo on mostly carpeted surfaces. It's been a relatively interesting weekend so far, and we're seeing results but I'm not totally sure if it's what they're looking for. We need to do a repeat x-ray to see if the miralax did the trick, or if we'll have to resort to something stronger. In other words, if there's still poo clogging things up, are they going to want to continue higher doses of miralax at home, or readmit her for closer monitoring and more Go Lightly?