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.

Doing OK

Rosi and I see Michael all the time so it is difficult for us to see his progress. But if I think back and try to remember some of the very difficult times we had I can see we are in a much better position now. Michael is getting over his surgery and is handling himself much better nowadays. He is very healthy and strong and when we go out to visit we have a good time with him. The rehab has a rec center and usually we are the only ones in it so we play pool, ping pong and such and whoop and holler and have a good time. When we are in the big house all the patients are around and it is something to see. A couple of the gals have a crush on Michael and want his attention, but he is oblivious. Kinda funny to watch.

Michael likes to laugh now and cut up. He is very lovable and fun to be around. He speaks well and shows me glimpses of getting thru this. Don't get me wrong, there are still big gaps between where he is and normal, but he has come a long ways since this all began. If the chemo provides relief on his ability to communicate and process info, then I will be very hopeful. We will see.

Loss of memory is a big obstacle. Michael's motor skills are great. He can shoot pool or play ping pong like he always has. He does things that look very natural and were learned long ago. He also shows cognition and calculating skills when looking at the plays he should make in pool or playing uno or jenga, all of which he is very good at. But then we go into the bathroom and I will say lets brush our teeth, and I will have to show him what is the toothbrush and how to put the toothpaste on and how to brush his teeth. By the time we do it again he will have forgotten. That is what is puzzling to me, and it is only thru constant repetition that he learns some/many things.

They are also weaning him off of medications and he is doing well with that. His awareness is bringing a strong desire for him to "go home". Lord knows that is what all of us want, he is just not ready. Hopefully he will continue to progress and we can indeed take him home later this year.

Staying the course,
Pops

Waiting

This friday Michael sees the Dr. who performed the surgery and we are hoping he clears him for the Cytoxin treatments. We are very anxious for these to begin and see what happens. He is trying so hard to figure anything and everything out that is thrown his way. He is such a fighter! I can't imagine what it would be like to be in his skin for this long. We believe he has had this secondary encephalitis since about January 7th when his picc line was removed. I often find myself wondering where Michael would be if he was treated right away. What if an MRI was done before pulling the picc line? The most important thing I have learned thru all of this is...Advocate Advocate Advocate! If any of you go thru a medical crisis, these are some issues you should keep in mind. You can't ask enough questions. If you are not getting an acceptable answer, ask someone else. You not only have the right to ask, but the responsibility to your loved one. The medical professionals can be wrong. Push for the tests that you feel need to be performed and don't take no for an answer. OK, I'm off my soap box now. If any of Michael's friends are considering a visit, July is open other than the 8th-10th so far. He would love more visitors. This is the #(972)838-2602 ext. 2 or ask for West House where Michael lives if anyone wants to call. The best time to call during the week is between 4:00 and 8:oo and on weekends pretty much anytime. That is it for now. Thanks for keeping up. Post from Mom

Small steps forward

Even though Michael is back in the hospital from a complication from the surgery, I still feel hopeful today. Michael is making progress in spite of having nmda receptor encephalitis. That tells me he is a fighter! He had 2 friends visit this week. Landon and Ashley came to spend time with him and they had a great time! He loves it when friends visit. Thanks to those of you who have taken the time to do so. We really appreciate it. He has a wonderful sense of humor and is very affectionate. We are anxious for the treatment to start, hopefully in a couple of weeks. Please everyone pray for a good out come for him and no secondary infections. A word about Pate. It is a wonderful place and is staffed with folks who get it. I can tell they really care about Michael and we feel very good leaving him there. It has a family feeling and that move was definitely a good one. Michael has not had any injurfies since he came there. He even told me " I have friends here. " I loved it! That is it for now. Thanks for all the love and prayers. Mom

Surgery

Michael is scheduled to have surgery for friday. He has had a complication and they need to go in and repair some parts. Just another fringe benefit of his situation.

Other news is that he is going to undergo a regime of treatments for the NMDA problem. A test came back positive again and the treatment is basically a type of chemo. It may help him to get better sooner, and should not hurt him. We will begin that treatment in about 3 weeks after he gets over the surgery.

Other than that Michael is doing pretty well. He has made improvements in many areas, but not as rapid as I had hoped. Maybe the NMDA treatments will help. I still hold a lot of hope for my young man.

Pops

Breath of fresh air!

Not only is the location here at Pate, a breath of fresh air but so are the staff. We are amazed at how different Michael is responding to everything here. He is being treated with respect and compassion, and is totally meshing well with all 15 other residents. We play games and try to include anyone who is able to participate. He frequently pats another resident on the shoulder while passing. One man in particular has takin a liking to Michael, probably because he has a son his age. We call him the cowboy because he really is! He plans on showing Michael how to put birdhouses together. We have gotten to know all of the folks here and their stories,and it has opened our minds to a whole new world that we never gave much thought to before. This place has a "Family" feeling to it. We brought our Michael Jackson dance WII game this morning and entertained all of the residents and staff. We try to do alot of fun things when we are here visiting. It is so nice to see him smile. He is still as sweet as ever. We are still waiting on a test result, but meanwhile Michael is being well taken care of. Please continue to pray for his doctors to find a diagnoses so he can be treated once and for all. It is a good day. Post from Mom

Healing up

Michael is settling into his new digs pretty well. It is quite a different setup with open spaces and kind of a busy, community living arrangement. It is working well with him because he is just one of a crowd and is not singled out. He just fits in with everyone else and nobody gets excited if he wanders around. It is a large ranch with a nice recreation center, walking, and a hoops goal! We have seen almost no aggitation in the last couple of days, if he wants to leave we just give him some time and space and he walks it off and we can then redirect him to play some basketball or play a game. Less stressful on him and everyone else.

We are still awaiting some NMDA test results that if positive would require significant treatment. In a way we are hoping for the tests to be positive because it would explain a few things. We should know in a couple of days and will let you know. Otherwise, medically he is mending from many rubs and abrasions. He has one major problem with a finger but it is healing and hopefully when it gets better he will not have to worry about infections and such from open wounds.

For now I can tell you Michael still remembers how to shoot pool, play ping pong and basketball, that kind of stuff. Wild what he naturally can retain. He also has not lost his lack of patience. One of the other patients was playing uno with us and was kinda slow in making choices, so Michael just kind of looked at him and said come on dude! But overall he is returning to his sweet self, he just wants to be normal again.

orange you glad I'm here

Good news! Michael was moved to his new digs at Pate yesterday. It is a scenic, 95acre ranch. I saw horses, goats, and a donkey, {he and Michael should get along well}. The house he is in has open living spaces in the middle, and bedrooms off both ends much like a lodge. We are hoping the open spaces and ability to have choices will suit him better. We decorated his room with the stuff everyone sent and it looks like Michael. He did very well up until about 7:30 {at which time he needed meds and shut-eye} when he told everyone in a loud voice "just leave". The problem with his request is that he shares this abode with 15 other people. The staff quickly moved the other residents. Michael spotted the oranges on the counter, and someone whispered to Ashley, "I think he is going to throw it." You guessed it......he did. It was actually kind of comical, him standing in the kitchen throwing oranges at the staff. They quickly scrambled to remove the apples off the counter. He calmed down after his meds and shower and went to bed. I spent the night with him on a rollaway, and he slept 12 hours staight. This place has a rec-room with a pool table, ping pong, large screen TV and other games. I think we will spend alot of time down there when we visit. Post from Mom

Antsy!

We are still waiting on insurance approval to move Michael to a new rehab. As you can guess, he is getting very antsy! He is on an oncology floor, so they have to keep him fairly sedated but, the care he is recieving is great. His wounds are healing, he is getting much needed rest, and he is being cared for with compassion and respect. Please everyone pray that we get him into a place where he can start to recover. Ashley is here for the week, and he enjoys her company alot. On a humorous note, Michael still has that competitive drive when playing games. If he is losing, he trys to play a card that is obviously not correct, and when we object, he says "thats not cool". That is all for now. Thanks everybody for all your love and prayers! Post by Mom

It's great to be a Tennessee Vol

Updating from the hospital. I am watching Michael put away an enormous lunch after a morning spent playing Jenga, Uno and Domino's. I came in Wednesday to help transition Michael- we are in the process of finding a new rehab facility for him. I can tell that he has made neurological improvements since my visit in March (speech, aggression, confusion are all better). The speedbump that he is dealing with at the moment is primarily physical. Without saying too much, it is important that we find a new rehab facility for Michael.

When I got here, he looked at me and said "Tennessee!" (A fabulous greeting, in my opinion.) We walked the halls chanting "I said it's great to be a Tennessee Vol"- any UT fan knows how this goes. He even sang a little Rocky Top with me.

So, for now the plan is:

A. New rehab- we are touring a place this afternoon.
B. Continue getting Michael back to Michael, as much as we can. There are moments where it is clear he is in there.

Better

It is hard for us to see Michael's progress because we see him every day, but I would have to say we are seeing little things he is doing better. He speaks better and with longer sentences, and a lot of the little things we do every day are just at a more normal pace and behavior. He still has challenges like some pretty bad wounds on his fingers that will take some time to heal, and he still has no memory. He is affectionate and likes to receive calls and have visits.
He is going to the hospital monday to have another MRI and tests to make sure he doesn't have anything medical going on.
Summer is almost here and I know a lot of you are going to visit. He will like that.
Pops

This post is only a couple of days after the tornado's that devastated Alabama. Lots of people are hurting. We have a lot to be grateful for.

A request

Lisa Payne is working along with Barrie Hollins on something fun for Michael. They need all of his friends help. Send greetings to Michael in short and sweet or funny video clip via Lisa's email. payne0295@bellsouth.net You could be dancing or just goofing off like you might do if you were withhim. Also if you have any great pics of trips you've taken or events you've been at together, email those as well. I'm sure you all know how to video and email from your phones, so please do so. I would love to see something from every friend Michael has-it would be so awesome! Thanks in advance. Post from Mom [Rosi] P.S. This morning when I called his apartment, he actually answered. His RAs told him to pick up the phone and it was a great surprise to me!

Thanks!!!!!!

Thank-you to all who have sent something for Michael. His bedroom looks awesome! Just a little positive tid-bit.....when he arrived at CNS a month ago, he weighed 126 lbs. He now weighs 145 yeah! He had an appointment with Dr. Greenberg yesterday and he will be running follow- up tests [MRI,Lumbar puncture,& EEG] next week to make sure everything has been done that can be. I'm so grateful that he is keeping his word on following Michael's recovery. He said that Michael has made large improvements since his hospital stay, however their are large gaps and deficits that need to be addressed. Thank-you for calling him, he really seems to enjoy the sound of familiar voices. This is his direct # [972]594-0549 to the apartment. Ask for 21 when the office answers. I can't wait for his friends to start visiting him. His brother, Jordan is coming this weekend and I am going home to spend time with Loren, Aaron, and my sweet grandsons [Mike is soooo jealous]. Thanks to all of you who are planning a trip out here, I feel like it will bring some joy into his life because, it is sorely lacking. He is not happy here at all. Until he understands the reason he is at CNS, he will continue to feel like he is trapped. That is the best way I can describe how he feels. Sometimes he asks "What have I done wrong?" It breaks my heart for him and I explain once again that he just got sick. Please pray that at least his memory will start to come back, so he doesn't have to go thru this every day. That is it for now. Post from Mom [Rosi]

morning coffee

This morning, Michael and I sat on the sofa watching his graduation video. He had his protien shake and I my morning coffee. He was enjoying it so much, he kept patting my arm and by the time it was finished, my pj's were soaked. We laughed. He has such a sweet soul! I can tell he appreciates all the time Mike and I spend with him. It will be so great when his friends start to visit. Speaking of friends, put your heads together and let Lisa Payne help you create a video or dvd. She actually offered and she is excellent at it! Michael would love it! I also just bought a WII for his apartment along with the Michael Jackson dance game and an NBA game. Any other suggestions? Thanks for the posters of "Fight Club" and the "Strokes" {?} hope I have that right. Michael's RAs are really getting to know and care about him........makes me feel good! Love to all of out there. Rosi [mom] p.s. Lisa's cell# is [615]957-6225 if you want to help make a dvd or video for Michael.

One day at a time

I think I've learned to stay in the day. Looking forward is overwhelming, and looking back is disastorous. I'm going to celabrate all the small steps forward with Michael. Yesterday, I saw him smile, while playing Jenga, more than I have in months. He has gained 11 pounds in a month. He is sleeping quite well during the night. His combative episodes are fewer and much less intense. I feel like the staff is getting to see the real Michael more often and following our cues as to how to react to him. All these things are positive. I'd like to thank those friends and family that have called him. He really enjoys hearing familiar voices. If you struggle with what to say, just recall stories from your past with him and make your questions basic yes or no answers. Many are planning to make a trip out to visit him..........it will be so awesome for Michael. It looks like May will be pretty busy. Anyone wanting to visit just give me a call- [615]483-3354. Michael can also recieve mail at this address: 3915 P0rtland Road Irving, TX 75060 Apt. 21 Thankyou all who have sent something to decorate his apartment with. He still has alot of room...hint-hint Love to all of you for supporting us and Michael thru this tough time. Rosi [mom]