So Jaymes has been gone for a week now. Longest I've ever been away from him. Of course, I'm still there with him at least 3 hours a day but it's just weird not having him here. The house feels very empty.
His bedroom is all done. We painted three walls yellow, and one wall with the black chalkboard paint, so he will have an enormous chalk board to keep himself busy at night rather than destroying things. I painted little dinosaurs on the walls, and his name on his closet door- it looks a lot better than it did!
He was set to go home today, but things changed a bit so obviously that did not happen. He's doing well physically, now that he is on the lactose free diet, he is feeling a lot better. Without going into gross detail, his diapers require a lot less clean up. Thank god. They said he didn't really eat much today, but they gave him beefaroni, and he hates that so I don't blame him for not eating. Told them to keep PB&J sandwiches handy if he won't eat. He'll always eat that.
I came this morning for the visiting hours, and Jaymes was very hyperactive, and not that happy or capable of focusing. It was a short visit. Had the family meeting after that, where the social worker and I discussed his coming home today as he was supposed to be. I told her that based on how he was acting today, I was not sure it was a good idea. She said a doctor would be calling me, or meet me at the unit at evening visiting hours to discuss that.
Turns out either I or the doc had a miscommunication about medication. They thought I wanted him off the Risperdal and on something else. I thought he meant he was adding Tenex to the regular dose of Risperdal. So, they took him off the Risperdal, and started him on Tenex. Hence the weird behavior. So while visiting this evening, a nurse suddenly says she has discharge paperwork for me, and I was less than excited.
Prior to the nurse finding me, I'd been visiting with Jaymes, who was even more hyperactive, and not very pleasant. He was on the verge of losing it the entire time. When I was giving him his bath, he was kicking, throwing water and wet washcloths, and scratching. Got worse while getting him diapered and dressed... He was throwing toys and screaming, and continually hitting the nurse call button. Once I got through with the confusion about discharge, and they'd gotten a doctor on the phone to pacify me, things were ok. He'll start back on Risperdal along with his Tenex at 8pm tonight, and will go home Monday assuming nothing absolutely insane happens. I felt terrible saying no, I'm not going to take him home today... But I need him to be stable on the meds he is going home with. By Monday, he will be, so that's good enough for me.
Monday also starts (hopefully) the personal assistance, which will be around 2-2.5 hours each day (mon-fri) of Jaymes aweszome respite care worker coming to help out with him or take him out. On top of that, we are also reauthorized for respite services. So things are falling into place.. But man am I tired. Too much driving, too little sleep, and one meal a day doesn't work well for me.
On a more positive note, Sierra is just about potty trained. She had one little accident because she didn't make it to the potty in time, but in general she's spent the last 2 days out of diapers. Very impressive. I guess she is also starting pre-school soon, but really until this Jaymes crisis is over with, I don't have the energy to even think about it right now. We're wearing down for this week! I think we may have a Duke appointment on Tuesday too- bleh. You'd think I'd be skinnier with all the running around!
"Take off your cape and just be a friend."
5 days ago