Sunday, October 22, 2023

Kinda Frustrating

Code to enter the unit. 

This is hard. 

Not hard like it was in June, or last year.

Or lots of other times.

Hard as in it looks like maybe we won't be home on Tuesday after all, and I struggle with changes like that.

He started creeping up on his temp over the last couple of days. Not really a fever, just higher than he had been. But today, today he ran a fever.  Which lead to x-rays and lots of labs. X-rays that showed possible/probable new pneumonia.  Those are NOT the changes we were hoping for. His white blood count has gone up as well, although it's still in the normal range as well.  He's continuing to have his cranky brain spells where he drops his sats by up to 20 percentage points, but that's kinda expected since he's sick.

Tomorrow we'll get infectious disease (ID) involved. We need it NOT to have to take Zocin off his list of antibiotics. The number we have available is getting smaller and smaller. It needs to not get to zero. 

So that's where we are.  

Lower is x-ray from last Monday.
Upper is today. 😞


At the hospital.

But still on the floor.

He smiled when talking to Daddy on the phone. He "helped" with his g-tube cares today. He tried to look around various caretakers who were in the way of his TV show. And he's been whaling away at his toys. So he's doing okay.

It's me that's struggling. And that's okay. I can sit with this. I don't have to be happy and positive all the time. 'Cause sometimes this is hard. Sometimes the pressure is intense. And the ironic part is that it's usually when he's not as critical that my feelings are difficult to sit with. Maybe because when he's in crisis there's not time to stop and work through things. That's when I just have to move forward and leave the processing for later. So I'm going to sit with my feelings. Allow them to talk to me. Get to know what I'm dealing with so I can understand. They're not "bad" per se, just hard. And that's part of being human.

Plus I miss my bed. 

  If we will be quiet and ready enough, we shall find compensation in every disappointment.
Henry David Thoreau

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