I have more medical updates. Lauren has been unfortunately having continued abdominal pain. She had a gastric emptying study last week. It took a total of 5 hours (plus an extra hour because we did bloodwork while we were at the hospital). She was such a champ! We brought lots of fun stuff to keep us occupied since it was mostly waiting around. We played Yahtzee 3 times, read 12 books, she watched shows on YouTube, she played games on her tablet. It was a long day.
Her results came back borderline delayed gastric emptying. Normal is below 10% at the 4 hour mark. She was at 13%. Since she's still having pain they're changing her reflux medication from Prilosec twice a day to Prevacid twice a day (if insurance covers it). They wanted me to restart Periactin (a medication we tried recently and stopped due to severe sleep dysregulation and behavior issues) and I kindly declined. The nurse tried to encourage me to give it another try, but I finally explained she was literally not sleeping, crying all the time, and being super destructive (swiping countertops, aggression at school and at home) and she agreed that it probably wasn't best to try again. So the plan is to try the Prevacid for one week (once it arrives from the mail order pharmacy our insurance requires us to use), then if she's not better we'll likely try erythromycin. They noted in the chart that I have gastroparesis (for comparison, my retention at 4 hours was 41%) though they are theorizing her issue is post-viral/covid related. We also have to try her on a low fat and low fiber diet. So not fun for a kid, but it is what it is. Most of what she loves to eat does not fit this diet, so it's going to be a pretty big change for her. We'll do the best we can.
We saw sleep medicine/neurology last week as well. She's not tolerating CPAP, so the plan is to change to bipap, but we need another sleep study first and I can't get anyone to call me back to schedule it. Sleep medicine seemed to have a very different opinion about the Inspire surgery than ENT so now I'm not at all confident what we'll do. Neurology recommended an autism evaluation and recommended we see pediatric psychiatry or psychology. That's kind of a road block because there aren't a lot of options that accept our insurance. I don't think she has autism so I'm not sure that we'll pursue that, just because I don't know that it's the best use of our time and resources. I'm open to seeing psychiatry, we'll see.
We also saw ophthalmology last week, that was the easy appointment! Lauren picked out some sparkly pink glasses that will hopefully arrive in a couple weeks!
