I don't know

I don't even know what to write. I don't know how to begin or even if I can. Wednesday Ben was coming home. Joseph kept asking when he'd be home and if he could skip school and so forth. I was still nervous but happy. My mom was at the hospital with him getting his prescriptions and such when the medical care people brought the supplies we needed. That made me the one that had to learn how to use it all. I had a two hour crash course on how to use the bed, oxygen machine, air compressor, suction machine, nebulizer, feeding machine, lift, and the maintenance for them. Then I had to sign for it all, stating that I understood how to use it all. I set all of the things up and explained most of it to Momma. Ben got home around 7ish. We got him in and settled. He was wide awake and looking everywhere he could without having to move his head or neck much. His eyes followed Momma any time she moved. We were told he had a fever (from the pneumonia he has again). And that of course worried us. We were more worried when we found out that the hospital had decreased or stopped several of his medications. We had a nurse come and help momma learn the things she didn't already know about crushing the pills to put in his feeding tube and suctioning the trach. She was there for a few hours. I went to bed and Momma slept in the couch in the living room with him. She woke me up at 4:30 asking me to please come upstairs and turn his oxygen up saying that he was hyperventilating. She called 911. The ambulance came--the volunteers not the paid kind. We told them that we needed him to be taken to Bristol (30 minutish away) rather than the one in our town because it wasn't as equipped to deal with him as Bristol was. And they said that they had a problem with doing that--I completely expected them to say it was because of some protocol about passing up a hospital for another one. I was wrong. The next words out of this mans mouth was, 'we have to go to workin 35 minutes.' I kid you not. They were talking to my mom, if they were talking to me I would have had to say something, but them not actually looking at me and seeing the dumbstruck look on my face helped me keep my tongue long enough to realize we needed their help so I probably shouldn't bitch at them. They agreed to call in to the actual ambulance service we have in town and get another ambulance to our house to take him to Bristol. And then they stood there in the living room--one guy asking Momma questions about his condition and the other just standing. Neither did so much as touch Ben or help my mom. The other ambulance came, by then he was actually in respiratory distress and they had to take him to the hospital we didn't want him at. It was about 15 to 6 once they had gone and my mom collected herself enough to drive to the hospital. I had to stay with Joe--Bill had gotten up in the middle of everything and fed the dogs and went to work like nothing was wrong. I got Joe up about 7:20 and got him in the shower and took him to school. I came to school because I couldn't do anything. Ben was admitted from the ER to the CCU. His aggitation had gotten so bad that his right leg and both feet are raw and bloody again. His heart rate kept increasing. By the time I got there at 11:30 they were saying that something was positive (possibly cardiac enzymes)--but that means that he probably had a heart attack. Again. We had a neurologist (from where..I don't know) come in and talk to us about what we wanted done before he looked at his charts and such. This morning the other doctor was there. He was called off to surgury before he could tell Momma everything, but they've found 2 severe infections in Ben's body. At least one is already in the blood. Hes so sick all over again.

I found out that when the specialty hospital doesn't accept patients it basically means that they have found them to be lacking the ability to get any better. In my opinion that is saying "you're dying, we aren't helping. You can go to a nursing home or home with hospice." So my grandpa is at home. Hes not doing good. They put him on a different kind of oxygen than hes ever been on. He sleeps most of the time--pulling the mask off during his dreams. Moaning and groaning constantly while sleeping. I don't even want to know what hes dreaming about anymore. He told us once that he was having nightmares that there were people trying to take his oxygen from him. Yesterday I walked in the house and my grandma couldn't figure out how to use his bed and had him propped up way too far with his feet up higher than theys hould be. He was stuck--with no energy to help at all and not being able to breathe right. I fixed it and he couldn't even say a word to me. It really is heart breaking.

All of this is heartbreaking and I don't know how much I can take. My mom is the best person I've ever known. She doesn't deserve this pain at all. Her first child, her dad--All at once. We expected this from papaw one day, but not from Ben. And we weren't expecting anything now. Not now.

I don't know whats going to happen.