Sunday morning, hopefully a day of rest. It has been a rough week for Paxton. Since Elise's last update it has continued to be one step forward, two steps back. His fever is being managed by medication, but it isn't gone, he has a cough that sounds like bronchitis, and he's struggling to breathe.

Every test possible has been performed to try and diagnose him. So far, no official diagnosis. It was originally thought to be an infection, but now we're thinking it's a viral illness. The tough part is if you look at his labs he looks good. But everyone here agrees those are deceiving. One look at Paxton and you can see he's clearly sick.
We're all in agreement to treat this like a virus, despite having two viral panels this week come back negative. 

Ultimately the panels only test for the most common across thousands of possibilities. It's impossible to test for every single one. He started steroids last night to treat similarly to how he's been treated for RSV in the past to see if there's any progress there. These next 24-48 hours could be rough if it is a virus peaking in its symptoms.

And through it all, we still get glimpses of our Paxman each day. A laugh here, a request to read a book there. The enjoyment and concentration in his eyes as he "dances" or bangs on his drum in his bed to his favorite Sesame Street, Mickey, and other characters' songs. Seeing him trying to feel better is enough to make our days for now. It gives us hope that we're on the right track on his road to recovery.

In other news, the paperwork is working through the steps for a transfer to CHOP to take a look at his lymphatic system. Especially with his most recent setback, he likely would move any earlier than late this week, most likely sometime next week.