Home sweet home!
Happy New Year.
The discussion came across the table today that medically, Ethan has been stable and that the hospital really isn’t doing anything for him that we cannot do at home.
With the holiday slowness still lingering till January 6th, they decided we may as well wait at home.
So here we are, home, waiting for rehab to get figured out.
We are THRILLED! Home is always a great place to be and much more comfortable.
Now I do feel the need to make it clear that medically he is stable. Neurologically he is still very much struggling. He’s basically at a newborn state, very much dependent, irritable and, well, struggling. We already had one of his Homecare nurses come assess him and to get his current baseline.
Newborn. That’s really where he’s at. He’s needing head support. Doesn’t roll. Doesn’t reach for things. We’re not exaggerating when we say that. They still believe his vision is poor, which will get assessed in the new year as well.
These next few weeks and possibly months will be difficult, and he will still be going for inpatient rehab once paperwork and bedspace is figured out. I’m not emphasizing this to sound ungrateful for being home. It’s wonderful. I’m emphasizing this so people don’t assume that things are perfect now that he’s home. We are far from there. He is far from where he was 3 weeks ago. His meds also suppress his immune system, so he will be EVEN more likely to catch things, which would be REALLY bad for him right now.
We are celebrating being home while keeping in mind that his brain is still very much struggling and in desperate need of healing, and that the next while will be challenging.
But we will keep fighting, one day at a time. And for now we hope the comfort and familiarity of home will spark something in him and that his treatment he’s currently on proves to be enough to resolve the encephalitis.