Another day, another sleepless night. He repeated the same behavior, adding a very loud blast of stereo music. I called my mom and dad, hoping they could talk some sense into him, but of course, he's right and I'm wrong and he has no intention of stopping. Before they got here, he flipped the main breaker on and off over and over again about 5 or 6 times. Way to go, let's burn the house down while we're at it. I just don't know what to do with him. He is determined to "make" me change the computer settings to allow him to continue his illegal downloads, but I won't do it. It's just not about the computer though, if it wasn't that, it would be something else, and I can't let him lose everything we've worked so hard for just to shut him up. He's grumpy, Ainsley's grumpy, I'm grumpy, and it needs to stop. The soonest I can get him in to see the dr is tomorrow morning, but we'll be there.

Everything was ok as long as he had his laptop. Well, now it's fried. So last night he wanted to get on mine, then got ticked that I had him on a limited access account. I had told Fred to password protect the entire computer, but apparently he didn't, because then Bobby was able to, and blocked me out again. Then he told me he was not going to let me go to sleep until I changed it to full access. I didn't, so he followed me around, turning on lights as fast as I turned them off. I ended up unscrewing the bulbs on the overhead lights that he can't reach. He wouldn't even let me sleep on the couch, so I slept with Ainsley for a while. I would have taken the kids to my mom and dad's, but Ainsley didn't want to. I called mental health and the sheriff's dept, but as you know, they can't do anything unless he becomes violent, which he wasn't, just a PITA. This morning, I asked him the password, and he asked if I was going to change it. I lied and said yes, so he gave it to me. He hasn't tried to get back on this morning, but I'm pretty sure that he'll disconnect my phone lines again when he realizes that I changed the password. I'm going to drop him off at Fred's this morning, then I'm going to call his dr and see if there's some place to put him. I can't deal with this anymore.

I hope what I told him sinks in, but he's acting a lot better today. He even helped me take the Christmas lights down. I'm using his laptop right now, hopefully it won't take Fred long to get mine up and running once he receives the discs. I don't know if this means he's going to start behaving himself, but I can only hope.

He woke me up at 2am this morning, asking where his laptop was. I told him, so he then hid my keyboard and mouse. When I got up, I told him that if this continues, I will have the second phone line disconnected and remove all of the computer equipment from the house permanently. Then I will have him placed in some kind of facility for disabled adults, and I will take the kids and we will go on with our lives without him. He can act right and be part of this family, or he can spend the rest of his life alone. He gave me back my stuff.

So, about the computer. I'm here, but it's still really screwed up. It needs to be reformatted.

Now that he is doing better, Bobby has been playing on my computer and has totally screwed it up. He has been going to hack sites and downloading programs to get software to "upgrade" what is free. So then he has to download spyware killers, so then he has to download software to kill the spyware he got from doing that. It's a neverending cycle. I have never been so furious in my life. It has taken me 2 days to be able to get it to do anything, and it's still not right, so I'm going to see if my neighbor can reformat it for me. Then I'm going to put his account on limited access and keep it that way, and password protect mine, and make sure I never step away from it without logging out (that's how he got into it the last time). I have no problem with him using the computer, but it's supposed to be for all of us to enjoy. His way, no one can.

He's doing great! Went back to the dr yesterday for his monthly checkup. He's doing so much for himself now, including cooking simple meals and cleaning up after himself. He's beginning to get back working on computers now. He wants to drive, but the dr says not yet!

Mood:  a-ok
I thought it was time for a good progress report! Bobby has been doing wonderfully! He walks through the house unaided, and only uses the cane for outings. Sometimes he'll use the furniture or walls to steady himself, but mostly he has learned to balance. He still occasionally complains of vision problems, but I think he's mostly doing well with it. He still can't hear from his right ear.

He was up and had Thanksgiving dinner with us. He talked and socialized with everyone, and ate a full plate of food, with dessert! He's had no tube feedings for a couple of months.

Now he's getting bored, and he's wanting to start to get out and do stuff. I'm not sure if I'll be able to keep up with him. He has started to become interested in the computer again, except sometimes he forgets what he's doing, and screws up my settings, grrrr! He's also been spending a lot of time with Adam, reading to him, or watching tv with him. It's wonderful to see them together.

He is scheduled to have another procedure to stretch his esophagus and have the feeding tube removed on Friday. He's really looking forward to getting rid of that thing.

Progress! Bobby went back to have another procedure done to stretch his esophagus on Friday. The doctor is pleased with his progress. He wants to do it again in a month, and if at that time, he continues to do well with eating, he will remove the feeding tube.

Bobby has made some progress this week. He's eating! He's had scrambled eggs for breakfast the past couple of days, and hot pockets for lunch. He had chicken and noodles with us for supper. He's even swallowing his medications without having them crushed. I haven't fed him by tube for 2 days.

He went back to the surgeon today. The plan is to go in once a month for a while to dilate the stricture in his esophagus. They can't do too much at once or they risk rupturing the esophagus. They will still leave the feeding tube in for the time being until we're confident he can eat enough to sustain himself without it.

I also heard from Tenncare. They wanted me to write them a letter telling them why they shouldn't deny our appeal. Idiots.

Bobby went for his surgery recheck and staple removal today. He's doing ok, except for the persistent diarrhea. It's kind of a common side effect of gallbladder surgery, but most people can counteract it by eating certain foods to help bind things up. Since Bobby still hasn't been able to eat, he didn't have that option, so everything he took in went right through him. I've been giving him Immodium, but it hasn't been helping. They are going to call in a prescription for Lomotil, but it will be tomorrow before I can pick it up. He has been given the ok to start on soft solids, so he had some oatmeal when we got home. So far it has stayed with him. I hope things are going to start turning around for him now.

Bobby came home yesterday evening. I'm not so sure this is a good thing. I got almost no sleep last night. He twitched. He jerked. He talked in his sleep. All night long. If we survive all this, I may just have to kill him.

Bobby had his gallbladder surgery today. There were complications. He had some bleeding issues, and they also found that his spleen was enlarged. They had to remove it as well as the gallbladder. They weren't able to do it laprascopically, so he has another nice incision down his belly. The stricture around the esophagus is another thing. They were only able to stretch it a little bit, or risk tearing the esophagus. So he's going to need to have a series of "frequent" procedures done there, to stretch it a little at a time. I don't know how frequent. Because of the problems, he was sent to the ICU, for the night, and possibly the weekend. I kind of expect him to spend the better part of the week hospitalized. I'm tired and I don't think I can do this anymore.

Things are looking up. Bobby is now walking almost exclusively with his cane, and reserves the walker for dr. visits or other outings. He can even walk without it a little bit here in the house, if he stays close to a wall or piece of furniture. At his last dr visit, he reduced or eliminated some of his medications. He is really interested in eating, but he still gets sick most of the time when he tries it. He finally saw the surgeon and got his gallbladder surgery scheduled for Sept. 30. Hopefully that will begin to take care of his eating issues.

I understand why people "go postal" when dealing with the government. Seriously.

Today Bobby had an appointment with a psychiatrist 30 miles away. This appointment was made by the social security people as part of the approval process. He's already got his SSDI, but the date of onset is still being appealed, although he won't get any backpay, it will all go to the attorney and insurance company. But it's still important because it'll get him on Medicare.

We got 2 letters regarding this appt, one of them just a few days ago. They always say something about calling if you can't keep this appt, etc. We didn't call. We planned to go, and we did. On time.

It turned out the appointment was cancelled. We weren't notified of the cancellation, or we wouldn't have woken Adam up, paid $900/gallon for gas and driven over there when there are about a million other things we'd have rather been doing. As soon as I got home, I called the attorney's office. They weren't notified either. I hope they are still going to pay me mileage like they are supposed to.

Woohoo!
Today was very productive! I called Centerstone, where Bobby sees his counselor about the "safety net" program and they said their info showed that his TennCare is in effect until October 15. She gave me a number to verify it, and that's what they said! So I spent some time on the phone, making an appointment with his primary care physician to see how to proceed from here, and with the therapy dept to get him back in that. I hope we can get his surgery scheduled and back in therapy before long.

Still trying to sell his truck. Had one call, guy never showed up. Know of any takers?

Bobby had his exam for his SSDI back pay. I guess it went ok. I didn't go in the room with him, but he said they did a thorough exam. It took about an hour. If he gets approved for the back pay, he'll qualify for Medicare.

I just got a call that he has an appointment here with a nurse for some Medicaid waiver program. I remember the agency that came out here to do the paperwork, but I can't remember the details. So much to keep up with.

Lots of ups and downs these days. Bobby is doing remarkably well now. He's alternating between using the walker and a quad cane. He hardly ever uses the wheelchair anymore. We're still waiting to hear about his gallbladder surgery. He's really paying a lot of attention to Adam, although Adam gets so hyper, I'm afraid he's going to hurt him.

He went to the neurologist Friday, and he's very pleased with his progress. He doesn't need to see him for 6 months.

The biggest downer is still wondering about Tenncare. I wrote a letter to the governor and state rep pleading his case. I cc'd it to tv and newspapers. It was published in our local paper. Hopefully someone will have some answers.

Good news for a change!
Bobby saw the ENT dr today. He said his airway is a little small, and there is some scar tissue, but NOT a problem, so NO tracheotomy! Now we need to hurry and get the gallbladder surgery rescheduled before his Tenncare runs out. He'll go to the larger better equipped hospital this time.

Well, wouldn't you know it? Bobby finally starts to get some answers and starts making some headway in his recovery, and we are once again losing our Tenncare. We're covered until Aug. 1. Why? We make too much money, and don't owe enough in medical bils. What a crock. Unless he wins the appeal on his disability case, and qualifies for Medicare, it's over for him. The kids will be covered.

So much for optimism
Bobby went in to have his gallbladder removed today. We were both a little apprehensive, considering everything he's already been through, but we were ready to get on with it and hopefully get him on the road to recovery. So he had some problems. They got him sedated, then were unable to intubate him because his airway is too small, from some swelling and possibly scar tissue caused by the stroke. They gave me 2 options: perform a tracheotomy to establish an airway and proceed with the surgery, or let him wake up and consult with an ENT dr while he is in the hospital or ASAP, and try to do the surgery at some later point. I chose to wait. If it were a life and death situation, and he had to get that tube in, of course, I would do it, but it made the gallbladder situation a lot less important at this point. They decided to keep him overnight anyway, since they poked around in his throat so much, they didn't want to take any chances on it swelling up. On one hand, this is a complication I wasn't expecting, and I was hoping for a resolution. On the other hand, this in itself could have a lot to do with his eating issues. I just hope they can do something about it.

Then to top it all off, I came home to letters from Tenncare saying we might not be covered. Of course, one letter says 4 different things, so I have a call in to our caseworker to translate it. There are different plans, too, so who knows what it really means.