Episode 8: An $87 mistake
It seemed like a good idea at the time, but Nexium was anything but that. $87.10 later, we were at the mercy of a malfunctioning digestive system. Let me take a step back for a moment, and explain what I mean by that.
This story starts at the beginning of 2020. The volume of Olivia’s oral secretions had increased gradually over the first couple of months. At first, we thought it was just teething, but as her secretions got worse, we realized that something needed to be done to help her. After talking with her doctor, we had decided that the probable cause of her extra secretions was reflux. For a long time, she has had issues with reflux and gas, but it wasn’t until early 2020 that things got bad. There had been a discussion in the early days of her diagnosis that she might have GERD, but at that time, her symptoms were not severe, so we didn’t worry about it. As her reflux symptoms got worse, she started having more secretions, gas, discomfort, and episodes of screaming. When I spoke with her doctor, we discussed different possible treatments before agreeing upon a medication called Nexium (Nexium helps to treat GERD by reducing the amount of acid your stomach produces). At first glance, it seemed like a great solution to her reflux problem, so we figured it wouldn’t hurt to give it a try. After all, what could go wrong?
On the 13th of May 2020, we decided to take a chance on a new medicine. Within the first 24hrs of being on Nexium, her reflux and secretions had improved slightly, but not as much as I had hoped. The following day, her bowel movements had begun to loosen up and become more frequent. At first, her body seemed to be responding in the same way that it normally did when we would introduce something new, however, things changed quickly (as they usually do). As her bowl movements rapidly increased in speed and volume, I found myself having flashbacks to when she contracted C. diff. Much like with her C. diff infection, her diarrhea was relentless. The best way to describe what it was like, would be to compare it to an exploding barrel of toxic sludge. Our only warning was the explosive sound of the poop exiting her body (so basically no warning at all). Within seconds after the blast, her clothing and the surrounding area would be flooded with stool. During that time, her bowel movements had become a 2-3 person job to clean up. By the 16th, the frequency of her bowel movements had increased from once a day to almost 10 times a day. I found myself frequently questioning how it was even possible that someone her size could create that amount of fecal matter. As a precaution, we started to supplement her with Pedialyte to compensate for the loss of fluid she was experiencing. We were feeling discouraged, but we decided to wait a couple more days to see if things would improve. By the 19th, things had gotten progressively worse, so we decided to pull the plug on our Nexium experiment. 24hrs later, her diarrhea had not improved, so we restarted her probiotic. After 3 days it seemed like the probiotic wasn’t helping, so we stopped giving it to her. Her diarrhea had slowed down a bit, but it was still far from ideal. After 6 more days of runny poops, we decided to give the probiotic another go. By the 3rd week of being back on her probiotic, her bowel movements had begun to slow down and thicken up. Life was starting to return to normal again (or at least as normal as it could be during a pandemic).
Thankfully we had an adequate amount of nursing help during May 2020, because it ended up being a rather intense month for us. That month Olivia ended up having an Echo, an ECG, blood work, neuromuscular, cardiology, neurology, and therapy team appointments. During that time, we needed to restart her iron and probiotic supplements, and we were also dealing with the Nexium situation. Normally I put a lot of research into any new medications we consider giving to Olivia, but this time I allowed my optimism to distract me from the bigger picture. In hindsight, I should have looked more closely into the possible side effects before giving her Nexium. If I had, I most likely wouldn't have given the medication to her. Considering how chaotic this experience was, it could have been much worse. Olivia’s health was stable, she was in relatively good spirits, and eventually, we managed to get her diarrhea under control. You might say that this story had a happy ending.
