The hearing

Well the hearing didn't go great. They didn't have the information we had sent or the nursing agency sent. This even though I had a signature via UPS that it was received at the beginning of August. So they had to postpone the hearing so the doctor could properly review all the information submitted. However their doctor stated that the neurologists letter that states Jude's situation has deteriorated explaining he is on a continuous feed, oxygen, new medications, etc still wouldn't warrant the nursing. We don't even ask for full time nursing like Jude's doctors prefer. The doctor and I got in a bit of a professional riff. She was extremely rude, but I guess she realized how she was acting and apologized. She promised she would review all the information today and would make a decision. So let's pray she decides to continue his hours because I am tired and stressed. I don't want to do this anymore on top of Jude's issues. However it sounded to me like she still believes he doesn't have medical necessity.

Jude had two autonomic attacks last night and they weren't good. Mike and I both really had to work with Jude to get him back to normal. I am going to post a video of the one on the couch. I had already administered Valium here so he is starting to relax a bit. Keep in mind Jude can laugh with pain.

The one Jude had when we put him to bed was more concerning. He looked like he was panicked because he couldn't get oxygen. So I checked the cannula and it wasn't working. He kept setting off his alarms, was turning red, and was just stressed out.  I finally lifted Jude up and took him to the living room. I held him and stroked his hair until he calmed down and started to breathe easier. However any time I would move he would get stressed again. So I finally took him back to his bed and when I put his oxygen on he calmed down and soon went to sleep. He slept fairly well. His o2 alarms would go off every now and then but he would recover.

The hearing put me in the worst mood. I am just so tired of dealing with things lately. I am tired of people saying "sorry". Tired of the hugs they feel they need to give me. Grateful they are there, but just beat down. Oh and my brakes went out. Dear Lord..........I would like a break now please, thanks. Just call me Grumpy cat today.