A New Development

Well, this has been a crazy day. Mom got a call this morning from the neurologist at Vandy that Michael orignally saw earlier this month. Apparently she had ordered a test done that takes 2 weeks to get back. Michael tested positive for a whole new type of encephalitis. It is called NMDA-receptor encephalitis. You can read about it here. It is extremely rare, just categorized in 2007. Mostly women get it.

Sooo, this brings all kinds of questions, which we do not have the answers to yet. He has been moved to a hospital in Dallas and will be receiving treatment there. It is an entirely different treatment than what he has received for the HSV E.

Dad is with him, mom is on her way as I write this. My feelings are mixed- frustrated that he is back in yet another hospital, exhausted that this roller coaster seems to keep going and going, and hopeful that this is the answer we have been praying for. If he can be successfully treated for NMDA E, he has better chances of recovering than he did with HSV E. It could explain why he has not gotten better. Again, waiting to see what happens.

Big D

Michael took us on a new phase of his journey today. He flew with me to Dallas and checked into his rehab facility. He made new friends and is beginning his return to our loved friend and family member.
He had a first today in that he got to ride in a Beechcraft Baron from Nashville's Tune Airport to Dallas, courtesy of my good friend Bob Owsley. Rosi and Coop saw us off and watched us disappear westbound. Another good friend of mine, Karsten, was with us in the plane for support. It was a great 3 hour flight. Michael inspected everything in the back seat and enjoyed the view. He also slept for the last hour or so, but seemed to enjoy the ride OK.
In Dallas, we took Michael to his new home for the next few months. It is a top notch facility and the folks are caring. We did a quick walk through and evaluation, and then went over to Michael's apartment. There was a fully stocked fridge and there are attendants who will be with him 24/7. He is in good hands.
I had mixed feelings. I know this is the best thing for him, but I want to hold him close and protect him. Luckily I had my friends with me to help me through this.
The best thing the folks at the rehab center told me is that I should not judge the final outcome for Michael based on what I am seeing now. His brain is still not over the trauma it experienced and the healing is just now beginning. They will get him into a rhythm of life, therapy, and sleep to allow him to heal and get as far back as God will take him. They gave me hope, which has been in short supply lately.
I am exhausted so I am going to sign off now. But I know many were waiting for news on how the day went. It went well, Michael is exactly where he needs to be.

Moving

Looks like Michael will be leaving Vandy tomorrow morning to head to Dallas. The insurance just came through with final approval of his treatment. We are hopeful that this place will be great for him. He will get 4-6 hours of therapy a day, from speech therapy to occupational therapy. They are estimating 4-6 months he will be in rehabilitation. Any friends that want to stop by tonight before he leaves in the morning, feel free.

Bball

Some things you just don't forget. We played some bball tonight. Michael showed some moves off to Graylin and Kristen. He is demonstrating a behind-the-back pass for Kristen. Very nice.

We get official word tomorrow from the rehab. Hope to move Wednesday.

Pics

I have refrained from posting any pictures of Michael during his illness, mostly because he is not really himself, and I think he might be mad at me later. But these are worth posting. One is Michael flirting with some nurses at the nurse's station, the other is with two old friends (that happen to be attractive ladies....)

Enjoy!

Yes!

We started out today with no plan in place for Michael. The insurance refused to cover a rehab facility, and no facility had accepted Michael. He had a rough, rough night last night. Mom and Dad were feeling desperate enough to get him out of the hospital to just check him out and bring him home.

But prayers work! Scroll down and see what I asked for prayer for this morning...

At the end of this day, we have a plan: Michael is going to be evaluated Monday morning by a representative from The Centre for Neuro Skills in Dallas. They know the full extent of Michael's condition and are ready to accept him. Yes! We have a plan for transport that blows my mind- a friend of Dad's has a private plane and has agreed to get him there. Yes! This place is 20 minutes from Dad's apartment in Dallas (where he works), so Mom and Dad will be very close and able to do what is needed to facilitate in his rehabilitation (Yes, he is going to be rehabilitated, I believe that with all my heart.) Michael had a good day- he got all spiffed up this afternoon including letting his big sister shave off that mess on his face. :) The best news came this afternoon when Dad got a message that Michael's company had worked with the insurance company to get the rehab paid for. YES!

It was a Yes! kind of day. 

Mom asked me to thank everyone that has pulled shifts at the hospital and the house. I am going to try, but may forget a few...

Coop, Landon, Corey, Ashley, Dale, Rajib, Cory, Butch, Greg, Graylin, Brian, Carol, Gay Lynne, Lisa and Kelly, Schemmel, Jasson, Buckner, Reagan, Kristen, Amy, Barrie and Steve, Juju, Maisie, and our hero Bob Owsley. You guys are a bridge over troubled water. Thank you. 

We have a long road still ahead, but tonight I am celebrating what God can do, and the power of community. 

Love, Loren

Finally, a break

After a rough morning, the sun is shining a little bit. The rehab in Texas seems like a go. They are sending someone Monday morning to evaluate Michael, but the admissions contact knows all about his condition and has said he is the type of patient that they treat and work to get better. Yes!

For now, his IV is out and medically he is stable. He had a much-needed shower and is looking better. Next step, shave that funky goatee....

It is going to be a long weekend. Anyone that can come to the hospital for a shift would be great. Contact one of us if you are available.

Today

Michael's HSV test came back negative, meaning there is no further infection. His brain still shows inflammation, but medically Vanderbilt can not do anything else for him. He is ready to be released.

The battle now is getting the insurance to pay for a rehabilitation facility. Insurance stinks!!! I am sure that some of you have fought these battles before. I am praying that they will come through today and agree to cover a facility. We are focused on one in Texas near Dad's apartment there. Mom and Dad would be there and Dad could work, this seems like the best option at this point.

We are feeling desperate to get him out of the hospital at this point. It is so hard to see him confused, scared, frustrated.... he needs a place that will work to get him better through multiple forms of therapy. The doctors have not been positive about him regaining 100% of his faculties, but we all know that Michael is one to beat the odds, and that the power of prayer is huge.

Please pray today that we are able to get him into a rehab.

Vandy Update

We are awaiting some tests results, but the main thing we are looking for is a long term facility for him to have treatment/rehab. His condition really hasn't changed. We should know the tests results (MRI and Lumbar Puncture)and maybe where he will be going in a day or so. These hospital rooms are getting real small.

Vandy

The docs at Vandy are very good. There are several from psychiatry, neurology, infectious disease all looking at Michael's situation. It is obvious to us now that this is a long haul and Michael is in need of a good rehab treatment. We are considering options and should know more in the next day or so. Michael hasn't made much progress lately but I am still hopeful that with proper medication and rehab he will be back. Michael, of course, thinks we are full of crap and he should be back at work! I keep telling him he is on vacation and don't worry.
Jessica Cathy's dad sat with me this morning at the hospital. It was good to see Greg and catch up, it has been a long time. One good thing of all this is the way it has brought a lot of us together, young and old.
MRI tomorrow.

Back in the hospital

We're in the process of admitting Michael at Vanderbilt. I'll give everyone the breakdown on visitation once we get settled in. We'll definitely need volunteers for people to stay with him. We're not sure of the duration of his stay at this point, or whether we'll be seeking a long-term treatment facility. Everything is up in the air right now, but I'll try to keep the blog updated.

Calling all cars

We need help. My mom and dad are working round the clock to keep up with Michael and can no longer do it on their own. Michael's restlessness and anxiety seem to be eased by the presence of his friends. If anyone has any free time, please try to get out and visit Michael whenever possible so my parents can rest. The alternative is not something any of us want for Michael...

My Son

Small tidbit. Its 4 in the morning and Michael is laying next to me. He stirs and sees me and says Hello. Its dark. He asks who I am and I say Dad. He thinks and asks my name. I say Mike. He thinks again and asks my last name. I tell him and he thinks. He then says thats my name. I smile and say yes it is because you are my son. I turn on the light and point to a picture of all of us and show him our family. He lets it sink in and smiles. He asks how old I am and I tell him. I turn out the light and talk to him for about an hour, answering his questions. He pats me on the arm and then goes to sleep.

Post from Mom

Well friends and family, I have decided it is time for Michael's "Mama" to weigh in. Up to this point I have felt too raw to verbalize my feelings. Almost as if I might shatter into a million pieces if I begin. I don't wish this on any parent out there. The grief and sadness runs so deep that it feels like my heart is torn. Watching Michael struggle to reclaim his mind is excruciating. I want to fix it for him and cannot. He is such a sweet guy and has always been very close to all of his family. I have pretty much been numb for the last several weeks and running on pure adrenaline. I am normally a positive person, but this situation has tossed me into a black hole that I can not crawl out of on my own.  So, I decided I would ask for help.  I spoke with a wonderful female doctor today about everything and pretty much poured my heart out. After agreeing that an anti-depressant would help, she prayed with me for Michael and our entire family.  Amazing!  I guess God is looking out for us after all.  I am a woman of faith but must admit, I have struggled with my faith and anger thru all of this.  I can't look down for help so I simply choose to look up to the only One that loves my son as much as I do.  Please continue to pray for all of us.  Thanks to all that have helped in so many ways I cannot name them all.  I will pay it forward one day!

So much love

I had to leave the Sluders’ few days ago.
How selfish of UGA to start classes while my friend is still sick?

This sucks. I miss him, miss his family. Mike and Rosi were kind
enough to let me move in for a couple of weeks over the break and help out. In the
beginning, we made attempts to establish roles and routines, but
quickly learned that our days depended on Michael’s. Each was
different. His moods, behaviors and interests changed hourly (one
moment he’s frenzied and enraged, and the next he’s sharing his food
and passing out free hugs). And since he requires company at all
times, Mike and Rosi (often both) are always with him. Michael,
understandably, does not like it. He takes most of his anger and
frustration out on his parents. But they see through his illness, and
respond with love and patience. Mike and Rosi help bathe and feed him,
administer his medication, make sure he is never in a room alone,
alternate sleeping times, etc..., and all without a second thought.
I’d sometimes think to myself, ‘How are they are going to keep this
up.. it’s an impossible job’.
I remember one night Mike was giving Michael his medication through
the IV (which is now out thank the Lord!). Michael started yelling and
cussing at his Dad, slapping his hand away. Mike responds with, “Hey
buddy, you know I love you.”
Mike and Rosi find the strength and patience somewhere. I think their love for
Michael is the only fuel left at this point, every other avenue has
been exhausted.

It was really incredible for me to see this attitude of total acceptance and aggressive optimism towards Michael’s
situation from the entire family. I felt it. They’ll do anything for
Michael, and will for as long as it takes. Loren, for example, has a family of her own. She’s
a wife and a mother of two (of, may I say, the sweetest and most
adorable little boys I have ever met) with a full time job; yet she
makes time to come over and hang out with Michael. She’ll bring dinner
for everyone, games for Michael and the boys to play- awesome games
(I beat Loren in connect four...). And when she can’t be with Michael,
she’s working behind the scenes for him: making phone calls, getting
favors (i.e. Doctors to see him sooner, rush his prescriptions..)
And Jordan, God bless him, had to go back to work and law school in
Nashville, but he drives to Gallatin several times a week after work
to see Michael. They have an unspoken language, those two. Jordan has
a way of getting through to Michael like no one else. Sometimes
they’ll both start laughing at the same time, I swear nothing funny
happened. I feel like they tell each other telepathic jokes or
something- it’s very cool, and, sorry guys, so precious.

As Loren said in her previous post, friends have been amazing!!!! I
love you guys so much. You are truly amazing people. I know Mike and
Rosi reeeeaaalllyy appreciate your visits and endless offers to lend a
hand.

I was fortunate to spend the past few weeks with Michael- witness his
sporadic, fleeting moments of seemingly complete awareness. And these
moments are becoming more frequent and less fleeting as the days go
on. His sentence structure and vocabulary substantially improved
during the days I spent there. And although word choice is still a
struggle, he doesn’t make up words as often as he used to.
Communication, overall, has improved.
I also began to see a consistent glimmer of recognition in his eyes
when I walked into the room. I don’t know the he always knew my name
(though he said it once), but he knew that he knew and, for the most
part, liked me.

I know from personal experience with a serious illness (nothing as
severe as Michael’s) that crisis pushes you and those who love you to
search wide, fast, and deep. It expands the heart and calls forth
reserves of courage you never knew you had. There is some mysterious
strength that arises within us in the face of catastrophy, a force
that allows us to prevail in the face of future challenges far beyond
our previous limits. Perhaps it’s soon to speak in this context. But a
certain quote keeps circulating in my head: “You either come out
golden, or don’t come out at all.”
Michael is coming out golden. His window for recovery is far from
closed. With the determination and collaboration of those who love him,
combined with his own stubborn nature, I don’t see that he has any
direction to go but up.

So much love
Maisie

What's Up, Doc?

Just talked to mom, they went for their first visit with the neurologist at Vanderbilt. Mom and Dad really liked her. She feels that Michael has made good improvements based on his records from Emory. This is hard for those of us that are with him a lot to see, so good to hear from the doctor.  He was able to follow all of her instructions (Point your toes, follow my finger with your eyes, hold up 3 fingers, etc.) which he could not do at all at Emory. He told her "What I think you don't know is that I'm a really smart guy. I know what the heck is going on, so.....frizzle." Haha. That is mostly right.

The best news of the day is that she pulled the hated PICC line! Michael was egging her on, saying "Pull it! Pull it!" :) He was really not a fan of that thing. She said he had received the maximum recommended time of the acyclovir, so he is done with that. This is great because he will be able to have more mobility and not have to be watched quite as closely (He was constantly trying to pull it out....). Hopefully he will be able to get out of the house more now.

Michael will start speech therapy twice a week next week at Vandy, and will have tests run to check on his brain's progress.

On a side note, the meals have been incredible for my parents and an enormous help. Thank you so much to those who have brought food and are signed up to do that in the coming weeks. Also, Michael's friends have been awesome and a lifesaver for my parents. You guys are amazing!

Funny story

Back when Michael was first starting to communicate, we were watching tv and a "Shake-Weight" commercial came on. He pointed at the television with a bewildered look on his face and asked, "What the hell?" It was pretty amusing because that's exactly what I've thought every time I've seen it.

Connect Four

Had a good visit this afternoon with Michael. Patrick and I took dinner over, met a friend of Michael's coming out. He had been really cranky today. He is frustrated, stir crazy, and keeps looking for his stuff. One of the biggest frustrations is his inability to communicate what he wants. The words come out wrong, so we have to guess. I wish so much that I knew what he wanted so that I could get it for him!

Anyways, it is hard to be mean to a 6-year old that only wants to love and play with you, even for Michael. He is sweet with the boys, and seemed to cheer up when Patrick was around. I got him to play Connect Four with me, and he totally kicked my butt! He would drop the last piece in and say "Aannnd... I win." The brain is an amazing thing. He can quickly figure out how to beat me at a game, but does not know my name. He can do simple math, but can not read.

This continues to be a tough time for everyone in my family. I appreciate everyone's concern, but I honestly don't know how to answer the question "How is Michael?" The best I got is that we are praying, waiting, and trying to celebrate the little victories.