It was a weekend, so the center was understaffed, and it was hard to get people to help get him in his chair. We were there for two hours before he had his blood pressure medication and got into his chair, which was frustrating to say the least. The kids were both ready to go home by the time he even got out.
Eventully, though, we were able to eat lunch, go for a roll around the grounds and have cake. We got to sing to Rorysaurus as well.
(Yes, that is a homemade Batman Beyond cake)
(Needlenoggin and Rorysaurus seemed to like it).
Then we packed back up into the van and headed home. i won't be seeing Needlenoggin again for over a week, since I've got surgery tomorrow.
Here's my biggest irritation. There's no one in charge of all of this crap. The Center wants to send him home on 9/2, but no one has called us to tell us that. At the hospital, we were told he'd need a regular bed, but the Center has told Needlenoggin that he'll need a hospital bed for the 6-8 weeks he's home, and who knows after that. Oh, and because of his neck-brace, the wheelchair he's in at the Center (which may or may not be coming home with him temporarily, whenever he comes home) makes him FOUR INCHES too tall for a standard wheel-chair van. They are supposed to hold a family training and a transportation class for us *sometime* before he gets out, but no one has told me anything at all yet, and I'm the one trying to make sure he has a roof over his &#@%ing head and someone capable of caring for him when he gets home. In Home Support Services should be providing him with a caregiver, but he needs CASDI (California State Disability Insurance) and SSI (State Supplemental Income) and his Medical clearance before that can happen, and those papers should have arrived a week or more ago. Who is in charge of this nonsense?
Each state should have a book of the people to call to get his figured out. While I'm not really one for government intrusion, I'd happily pay more of my taxes out if I could talk to one central paralysis person and get all this crap straightened out.
/rant
Alright, now that that is out of the way, I'm going to go feed Little Monkey and pack up for tomorrow. Big day and all.
2 comments:
I've been following along since Erin (a friend of yours, I think?) linked to your story. Does Needlenoggin have a social worker? My cousin was paralyzed 2 years ago and although I'm not sure how his parents came into contact with her, they ended up getting a social worker from the county or state that was assigned to him (paid for by taxes). She helped make sure he got appropriate care and everything that he needed from the hospitals and care centers. She also facilitated the communication between the centers and the family. If you don't have one already you may want to look into it and if you have one but they're not doing all of this for you, you may want to contact a supervisor. They should be helping with the van and bed search, as well as clarifying any special types or models needed.
Coordinating services is such a beast. Why do families have to re-invent the wheel? Ugh. Do you have a social worker either through the center or the hospital who can help you? Good luck today with your surgery and happy (belated) b-day wishes to Rory. Hang in there!!!!
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