Yup. The title pretty much sums it up. I’m in the hospital right now with Micah. We got here at midnight, and it’s 4am now. Micah had a bit of a stuffy nose this afternoon, and he woke at 9:30pm tonight with a high fever. He nursed for almost 2 hours off and on, but his fever kept climbing. With a “normal” kid, I’d maybe give a bit of Tylenol or Advil to help with pain and fever, give extra fluids, a warm bath, skin to skin, and take a few lazy days at home. With Micah though? Not so much. He can’t take most oral medicines since they have fillers like dairy, soy, and corn. Most FPIES kids need IV medication. It throws quite the monkey wrench into everything. So here we are.
Thankfully, the ER doctor is very interested in FPIES and how to treat Micah. He asked for a whole back story and what happens and why. It’s nice having doctors who want to learn.
Micah currently has a bag to collect urine and check for infections, and the ER doctor says it’s possibly just a typical virus. But given the FPIES and MCAS, it’s not as easy. He said we can go home and wait it out, he can get some hopefully safe medicine, or we can be admitted to the pediatric unit for bloodwork, who knows what else, and observation.
For now, Micah is asleep in my arms while we wait for urine. He’s a fevery, snotty mess, and I’m not sure what the results will come back with. Guess we’ll find out. I’m exhausted. 4am is a time for sleep… not hospitals.