Today was good because I was able to see my son. It was hard because I found him hiding under the blanket.  

He was again withdrawn. He was sitting completely covered head to toe with his blanket,  Sponge Bob cartoon blaring on the TV. No one had bothered to coax him out or interact with him but instead put on a purile kids cartoon for him to hear against his will. He hasn't been interested in SpongeBob since he was 10 and I've reiterated that over and over to staff members.  And his thermostat was high again on 73 degrees.  He likes it at 70 because he's hot natured and he gets a low grade fever when too hot.

Joshua is in a precarious situation at the hospital right now. Between the disconnect of the doctors, staff, DSS members and me, its becoming a quagmire in which my son is getting stuck.

Their solution? Medicate Him. How about some Seroquel? Absolutely not! My son is fighting a brain tumor he's not a psych case. I understand it would be " easier" for them to drug him into submission but it's not what he needs. He's already stuck in bed 24 hours a day. An atypical antipsychotic drug would only put him further into mental fog and sleep.  Then he wouldn't bother anyone 🙄  

The common sense and most easily correlated answer as to why he's agitated or irritable is the removal of his family.  He's been alone fighting this. There's no coordination of care. His wishes are being completely ignored and he's been treated as less than human. We're talking about a kid with a very high IQ and EQ for that matter, whose become partially nonverbal due to trauma. I keep encouraging him to speak up for himself and tell them his needs and wants but as studies show, patients in hospital need an advocate! That's patients who can speak, how much moreso a teen who's intermittently nonverbal? 

All of this background to say.  Please keep Joshua in your prayers.  He needs advocacy and he needs family.  

I was so grateful to have a long embrace with my son. We clung to each other,  instinctively knowing we'd have to make this hug last another 48 hours. 

I'm so proud of you Joshua.  You are exemplary as a human and also as a patient. Duke hospital could not ask for a better more long suffering patient.  Stay strong Josh, keep the faith. Things are turning in our favor. I love you! ❤️ Mom