My zebras gastroparesis has been acting up pretty much non-stop for months. I’m afraid we’re finally at the point we’ve been afraid of: when the flare doesn’t stop and it’s just the new normal. She’s had a few good days here and there, but for the most part she’s struggling, especially with thin liquids. They don’t stay down any better than solids. She apparently has the Goldilocks model of stomachs.
So we’ve had two ER visits two weeks apart, with dehydration being the big issue. First there was the heart racing and chest pain, with the resting heart rate over 100 and low blood pressure. (Like 95/37). Assumed cause, dehydration, but we’re checking in with cardiology tomorrow just in case. We were okay with keeping our October appointment for her yearly echo and checkup, but her geneticist is sure she has autonomic dysfunction (which we’ve been sure of ourselves for a while) and wanted her evaluated ASAP.
Then there was the intractable vomiting. Horrible burning pain above her belly button and dizziness. IV fluids and meds got her back to rights again.
A few days later and here we are again. Second day in a row she can barely get out of bed. BP is low again. Can’t keep liquids down well so she’s dehydrated again, and we’re off to her PCP for what better be a bag of fluids. Otherwise you might see me next on the news.
In addition to all of this fun, when I went to give her her meds this morning, she couldn’t get comfy because her shoulder was pinching really bad. She yawned and her jaw popped and got stuck a minute. An hour later she puked.
I am so angry at the illness(es). I wish they were a person. I’d love to beat their ass into submission or just take them out completely. Most days I’m okay but today I’m just pissed off. I’m tired of her having to be tired and feel like shit. I just want my kid to be able to feel like a kid and live a normal teenage life. At the very least, if she could just not feel like shit all the time, that’d be great.