Never Boring

Well, our boy has done it again. Stumped an entire team of doctors and left many really smart people scratching their heads. 

{photo of Wyatt, laughing at the camera with a devilish grin}

On Saturday, Wyatt started with a few dots on his body. Nothing alarming, but enough to grab our attention. Sunday he had a seizure, again not alarming but attention grabbing for sure, especially since we had started him on a medication to reduce seizures and he had been almost a week seizure free. The dots turned to full on rash. 

For some super odd reason, rashes get us a bit panicky around here. Which is extremely ridiculous since our “normal” is seizures, not breathing, 911 calls, catheters, etc. Some scary stuff. And we tackle it as it comes. But throw a rash our way and we are unsure what to do. 

Sunday evening we ended up in the ER, since we realized there was a chance the rash was from the new medication, which has a rare but potentially deadly rash as a side effect, causing Stevens-Johnson Syndrome. ER was stumped, but we were sent home. 

Fast forward to Monday, rash had doubled since the night before and he had some desats in the night. We ended up at the pediatricians office (also scratching her head) with the fear that it could be related to the meds but also could be a viral rash. In typical Wyatt fashion, he was presenting with hallmark signs of both types of rashes and nothing super typical for either rash. (Typical isn’t in our vocabulary!) After a consult with neuro at Hopkins, it was determined we would monitor at home and remove the offending medication.  Thank god for pulse ox! What a relief to be able to know his oxygen saturations and heart rate at all times. Both of those would be indicators that things were going south and the rash was evolving requiring emergency attention. 

{photo of Wyatt in his stroller, wearing one sock, a diaper, and giggling. His body is covered in a red rash}

Today he has looked better, rash appears to not have progressed, and we will sleep a bit easier tonight. We certainly aren’t out of the woods, but we are now 24 hours with no meds and the rash hasn’t evolved. Hoping this is a good sign!

As one of my friends put it, we can never accuse Wyatt of being boring!