Empty

That describes how we feel. We have been with Michael day after day now for 7 months. We felt like our constant love and support would help him heal and come back, but its just not enough. He needs a facility that understands brain injury and is equipped to handle explosive behavior at times without harming him. That has already been done to him. He needs room to roam and physical activity such as a gym or rec room to let off steam when he becomes confused and angry. If anyone reading this knows of a facility like this, no matter where it is please let us know. We are at our wits end and very exhausted. In fact, I'm driving home tomorrow with Jordan and our dogs. I need to regroup and spend time with my other family members and let the pros handle Michael. Mike and I have both agreed that it is time to detach and let go. If we keep going at this pace, it will kill us. I feel defeated and like I'm turning my back on Michael, but I don't know what else to do. Post by Mom

What the heck is happening?

So this has been the most ridiculous day in quite some time. I know that Jordan and I probably have our facebook friends very confused, so I am using this as a forum to just let everyone know what is going on.

Monday, Pate (rehab center) gave my parents a week to find a new place for Michael. He is more aggressive right now (ironically, they attribute that to the healing process and more awareness....) and has hurt some members of their staff.

This morning (Thursday), they called mom early and told her that they could no longer keep Michael safe and needed him gone today. My parents made plans to pick him up and we started the ball rolling towards bringing him home to Nashville. Lots of phone calls and plans being made.

Mom and Dad went to Pate and picked Michael up. Almost immediately after arriving at their apartment, he became belligerent (no short term memory and paranoia are issues, so he did not know who they were), hit mom and dad, escaped into the parking lot, caused a scene. Cops were called. This obviously is a very clear sign that Michael is not ready to come home. They are currently at the hospital where he will likely spend the weekend and the first part of next week while they make arrangements for a new rehab center. Dallas is tapped out, so it will be somewhere far away. (California is the only option I have heard as of right now).

This puts our family in three different places. Big bummer. It leaves me reflecting (again) how quickly our lives changed last December and how much pain and confusion this has caused. I am having to draw upon deep reserves in order to remain hopeful or positive.

That's the story for today. Thanks friends and family for caring.

Loren

Please help

I hav'nt posted in awhile because things are so difficult. Mike is certainly right about progress, but with it comes a huge downside. Pate is wanting to send Michael to another rehab because they cannot handle him when he becomes aggressive. I am so sad because I thought this was the perfect set-up for Michael to heal. I must admit I am angry as well; I feel like they are throwing in the towel before the cytoxan has a real chance to work. If he goes to another rehab it would be out of state and he would lose his neurologist here as well as us. I believe it will set him back again. So I struggle with the question, "Why does'nt anything go his way and where is God when we need him desparately?" If anyone reading this has an honest answer or real hope to offer me, I would love to hear from you. I feel like I am drowning in heartache and don't know how much longer I can do this. At times he knows I am his mom, but then he does'nt and asks who I am. When I tell him, he becomes very upset and at times angry. He says that I am not his mom....he knows who his mom is. I walk on eggshells with my own son. When he looks me in the eyes with his beautiful green eyes and does'nt know me, I can't even find words to describe what it does to me. I am trying so hard every day to stay strong for him and put on a smile when I see him, but I am dying inside a little more each day. I think all of you know how much Michael is loved and I can't imagine what our lives will be like without him. I do know that we can't bring him home until he can get back some memory. We would not be able to keep him safe much less at home. He would leave and there is no telling what would happen to him. Insurance is already hinting that they can't pay for rehab forever, as they put it. If they don't do right by Michael and something bad happens to him, God help them because I will hold them responsible. Post from Mom

Changes

We are seeing some positive changes in Michael's overall awareness. He is asking better questions and wants to know what has happened to him and why he is here. He also knows us much better now and is able to take in much more of what is going on around him now.
We began with putting together 24 piece puzzles made for toddlers and now he can go through a 300 piece puzzle fairly quickly. The therapists say he is making real progress in his speech and cognitive therapies.
His periods of aggitation seem to be more short lived nowadays. But he is a handfull at times.
This is all positive and keeps our hopes up. So he still has significant gaps to fill, especially in the language and memory areas, but we feel we are moving in the right direction.

Pops

Dang!

Rosi and I were getting an update from Michael's therapists on tuesday afternoon when we were informed Michael was throwing up and there was blood coming out with everything else, and they had called the EMT's. Our hearts sank again, and pretty soon we were headed for another trip to the ER. AArrgg.

I missed Michaels arrival at the ER but they figured out real fast he does not do well in closed places and is real strong for his 150 pounds. It took 8 of them to get him under control, but by the time I arrived he was doing OK. After that, it wasn't too bad. His neurologist worked with the hospital and had him admitted to the ICU, where they can keep him sedated with a drip. He slept well there last night.

Today Michael was scoped and the good news is that all his insides appear normal. In fact, the doctors cannot find anything really wrong and are not sure why he may have had blood coming out. Blood count is normal, etc. So as of tonight he is still sedated with a breathing tube inserted. The plan is to remove it tomorrow morning and unsedate him. Hopefully if all goes well we will return him to rehab tomorrow afternoon.

This is unfortunate because we feel Michael has been making real progress and these events always set him back. 2 steps forward, one back. Ramble some. He is beginning to ask insightful questions about what has happened to him and why is he here. He can take a 300 piece puzzle and conquer it very quickly. His desire to 'go home' is becoming stronger than ever and it just breaks out heart when we can't do it. We look forward to the day when we can, but that is a ways away. The biggest obstacle is still his lack of short term memory and language deficiencies.

Another sign of progress is that he is also a little paranoid. He will ask anyone around him 'What's my name?' I think he does it to make sure that whoever is around him knows who he is. Jordan was here last weekend and we tried to take a short 'family' trip with J, Michael, Rosi, and me to Sonic, but it was unsuccessful. He wasn't sure who we were so it scared him a bit to be leaving with us, he became aggitated and we had to go back. Maybe next week. Small steps.

Michael is about a week away from when his chemo may prove beneficial. We will see.

Pops

Hospital visit

Michael had a visit to the hospital and overnight stay to receive a treatment for his NMDA diagnosis. It is a form of chemo designed to tell the body to stop producing antibodies that are maybe interfering with his recovery. We are hopeful the treatment will be effective, but the earliest we will know anything is a couple of weeks or so. There are no guarantees, but the doctor and we have a pact not to leave anything off the table when it comes to his treatment. We are hopeful. I am not sure what to expect, but we just hope to see progress.

Other than that, Michael is progressing, but the gap is still huge between now and being able to come home. He is conversive and healthy, but has practically no ability to put names to objects and remember stuff. One thing approaching normal is that the girl patients at the rehab like Michael. They come by and ask for hugs and vie for his attention. He is mostly oblivious, but when they get his attention he will show some compassion.

Rosi and I miss everyone and hope you are all doing well. We are doing what we need to do for Michael, and right now that is what matters. We will catch up later.