Another totally insane day

I am TIRED! Got up at 8 this morning, thinking I had a 10:00 appointment. Wait for my mom to come get Sierra to keep for the day, then at 9:00am I glance at the calendar. Guess what? My appointment was 9:00, not 10:00. So I get on the phone, and thankfully someone cancelled for 2:00pm, so that was fixed. When my mom got Si-Si, I did some work on Jaymes room. We are redoing it, and making it both safer and more attractive. He had peeled all the paint off the wall on one side, and two walls I never finished painting. So the plan is that one wall will be painted with this neat chalkboard paint my mom found, so that he can draw with chalk instead of peeling paint. The other 3 walls will be pale yellow. We're going to clean his nasty carpet, and put up some cute dinosaur stickers or something like that. Will be taking everything but the bed and his bean bag chair out (there wasn't much anyway) so he cannot climb to unscrew the lightbulb in the ceiling fan. I'm also going to chuck all the garbage in the closet (old sheets, broken toys) out, and fix the shelves to hold his clothes like it should be. Bought a combination lock to put on the door so he won't be able to open it and break the shelves all over again. Also am replacing all the electrical outlet plates with blank plates, so that there will just be no electric outlets to stick things in. It'll be clean, safe, and pleasant. It's a project I needed to get working on anyway.

Ok, back on topic. Did some work in the bedroom, then headed to the hospital. I went to the "Service Excellence" folks, who help mediate issues between patients and staff, and explained about the diaper rash and especially the concern that my wishes weren't being respected like they should have been. Amazing how fast that worked. The heads of the nursing dept met with me, and were wonderful. The issue has been solved, and the rash looks a LOT better. He is back in diapers only, no pull ups. He is being checked every 30 minutes, and it's being recorded on a chart. He is getting diaper rash cream every change. I am happy. Jaymes is happy.

I also met with the social worker, who I was able to explain my concerns and opinions regarding treatment with. She got me into contact with the Resident doctor, rather than one of the darn interns. He listened to me, and freaked me out a bit by saying Jaymes would probably be ready to go home tomorrow. I told him this concerned me, and that what I wanted to see happen, if possible, was for the meds to be stopped and given a day or two to get out of his system, then loading up whatever the next med idea might be, and observing that too. At that point, he suggested Jaymes take a 4 Hour Pass, to see how he will be at home. I was good with this, but had to rush out to my appointment first. Dropped one of Jaymes hearing aids at Comp Rehab to get fixed, picked up the one that was fixed, then ran to my appointment. Got a little lost, and called and again they were soooo understanding. Finally got there, the new psychiatrist is fantastic. I really liked her. She listened to me rant a bit about the Jaymes situation, then agreed that upping my anti-depressant dosage would be a good plan. She also said to keep taking the anxiety pills, because "anybody would be freaking out with al the stuff you've got happening!"

I agree!

So, run from there back to Comp Rehab, pick up the hearing aid. Head off to my friend's house, where I am petsitting. Took care of those animals, and came back to the hospital to get Jaymes for his pass. The doctor came in before we left, so we talked awhile. He said that he would agree with what I wanted- take him off the meds, let him detox, then we'll start him back on Risperdal, and try Tenex instead of the Clonidine. I'm guessing he'll go home Friday evening, assuming he is still doing ok. This makes me feel a lot better, and gives me some time to finish his bedroom, figure out the car safety issue, and get the in home personal assistance care set up. That will help a lot, it's 144 hours per three months, so around 2 1/2 hours five days a week. That will lighten my load tremendously. I am really hoping that with everything in the works, we are setting my little buddy up for success, rather than just hoping it'll change on it's own.

I took Jaymes home to wait for hubby and Sierra to get home. Jaymes and I fed gummy worms to the pony, who appreciated it. When everyone was home, we got in the car and went to McDonalds. Jaymes was happy, but he was really kind of sleepy and not all there, and kept asking to go back to the hospital. He did enjoy himself though. I enjoyed eating, I was starving. Had not eaten anything all day, so chicken nuggets never tasted so good.

Took him back later, gave him a bath and did his lotion, then gave him back to the nurses for the night. He was happy to be back, and wanted to go hang out with the teenagers. The little guy his age went home this evening, before Jaymes left on his pass he gave the other kid a hug and said "bye friend!" Now it's just him, and 4-5 teens. Seems like the teens are very tolerant though, and they seemed to like Jaymes. Jaymes loves everyone, so that works out.

Went home, but had to go back to Walmart for paint for Jaymes room. Got that, hopefully it's the right color or close. And now I am flopped on the couch with a fluffy black dog and my laptop and I am absolutely exhausted.

Things are improving, but I am drained. Just trying to maintain the little bit of sanity I had to begin with. I may go nuts, but my kid won't!