Are you eating? Thinking of eating? Just eaten? Maybe wait to read this post till later. I’m typically motivated to write about whatever is dominating our life at the time and honestly, right now, its poop. This is the life folks, just soak in that glamor! I mean, we’ve always talked a lot about poop in the Cervantes house: did you flush? Who clogged the toilet? That came out of who?! But the last two weeks have taken it to an entirely different level. Adelaide is often constipated, in fact about a quarter of the drugs she takes are just to help her have consistent bowel movements. It its likely due to a combination of having low tone, her mast cell activation syndrome and certainly not helped by the fact that nearly every drug she is on has constipation as a side effect. With the help of Senna, Lactulose, Miralax, probiotics, suppositories and warm baths we’d been able to get Adelaide pooping somewhat regularly up until a couple weeks ago. Around this time, during our last hospital admission, they did a stomach X-ray and realized that she was quite literally full of shit. She hadn’t pooped in over a week so she had to be storing it somewhere. While inpatient they gave her a clear liquid called, gentle-ease, through her g-tube, that was meant to clean out her system. Let me tell you, there was nothing gentle about it. Over the course of the next 24 hours she was swimming in excrement. The nurses called it a “code brown” and I couldn’t think of a more fitting term.
Well, we get Miss A home and within a week we are right back where we started. In fact, her tummy is so distended it looks as if her g-tube might pop out of her stomach. In hopes of relieving what must be incredibly uncomfortable pressure, we begin venting her regularly to release gas. This consists of connecting her extension tube to her g-tube button and letting the gas and excess stomach contents bubble into an open syringe. Look, I warned you that this post was not for the easily queasy. While this seemed to offer her some relief it was not a long term answer. At this point I scheduled an appointment with her GI hoping he had some magic answers unbeknownst to me and any RN that had come within 100 feet of our house. At her appointment he ordered yet another stomach X-ray -her fourth in two weeks- and surprise, surprise she is once again full of poop. He recommends an adult dose of Miralax and 1-2 suppositories a day and, boy, did that get the flow going.
On the Fourth our friend was persistent in making sure she got a photo of our family together, which I appreciated. It was the end of the evening and I go to pick Adelaide up out of her stroller for the photo only to find that she is sitting in a pool of liquid poop. We still got the picture but Adelaide is noticeably naked. An entire container of Clorox wipes later and you can only barely notice the smell. Then on Saturday night the kids and I are watching a movie, Adelaide is letting me cuddle her which is a rare occurrence these days. I am loving having this snuggle time with both kids until I begin to smell something suspicious. At this point I smell poop everywhere so I’m not totally convinced there’s anything there. I lift Adelaide from my lap to find that her diaper could not contain her massive load and it had poured out onto my dress. I’m not sure what is beyond a code brown but we were SO there. I couldn’t stand up for fear of crap creek running off my dress but also wasn’t able to set Adelaide anywhere because of the poop-splosion still pouring from her diaper. I think fast and enlist Jackson to save the day with a towel on the floor so I can at least set Adelaide down before stripping down to my underwear. Apologies to anyone who may have been driving by our apartment and witnessed me rolling my dress over my head with the shades completely open. It was an emergency.
Since then I have done more loads of poop laundry than I care to share. We have eased up on the Miralax and suppositories but the shit fountain is in free flow. Our epic game of whack-a-mole continues as we are now trying to find a way to thicken her poop but in a way that she can still pass it. The gas and distension seem to be causing her the most pain but what is the source of that? Another med side effect? Could it be a mast cell reaction to her food? So we control what we can and as of yesterday have completely changed her diet in hopes that giving her more easily digestible food will help with whatever bowel related issue is dished up next. In the meantime, if you smell poop in our home, car, stroller or, god-forbid, my hair - please don’t judge. I’m trying.
The unofficial mayor of the real Shit’s Creek
Kelly “but I JUST changed your diaper!” Cervantes
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