So Here We Are

Here’s the view for the day...

It’s a view that is comforting and familiar. But a view that brings some anxiety as well. It’s the view from Wyatt’s room at Hopkins. 

Saturday he had another febrile seizure and we ended up in the emergency room because his seizure was drastically different than the first febrile seizure. This time was more shaking and less unconsciousness, no dramatic ambulance ride and a worried mama scratching her head saying, “I think it was a seizure, but maybe not?” It was confirmed Saturday night that it was a seizure caused by his fever. They ran some tests, he looked better, we were sent home with the rather uninteresting label of fever of unknown origin and told us to watch him. 

Sunday was more of the same, fever but no real reason for the fever and LOADS of snuggles. Fever responded to Motrin/Tylenol if he got too high or was super uncomfortable. 

On Monday, we followed up with the pediatrician because his fever spiked above 104 (my personal threshold— I get really anxious at that point) and we took him in to be seen. Ran some blood tests and his white blood count was high, which meant he was fighting an infection of some sort. Pediatrician gave us an antibiotic and told us to keep an eye on him, but take him in if we felt like we couldn’t handle it. 

Monday afternoon he spiked to 104.8, the highest he’s been and after a few calls with his pediatrician and our nurse, I called it quits and brought him to the ER. 

They ran some additional blood work and urinalysis and there is an infection for sure. The fear is it may be brewing in his blood, which is much scarier than we had imagined. In addition to the infection, his feeding tube may have finally kicked the bucket, as he just started leaking from the stoma. So we have asked GI and the surgical team to consult to see if we need a new tube. The difficulty with his GJ tube is that it can’t just be placed bedside, it requires sedation and in Interventional Radiology. And we all know how he does with sedation. 

We are crossing our fingers that the blood work does not show any growth, that his urine culture tells us exactly what bacteria it is and we can treat that bacteria, his tube requires minimal fixing, and he continues getting healthier and healthier.