Med Update

We had our last family meeting yesterday. The Dr’s and Therapies were thrilled with his progress and are excited about his future. Mike continues to fight with initiation and where his body is in space. This appears to be one of the biggest hurdles that he has to over come but as always, Mike is up for the battle with a great attitude and outlook. Mike will have a procedure on Monday afternoon to turn the clot filter. We hope that this will be the last turn of the filter and the next procedure will be to remove the filter. Mike has come very far in his progress but he has a very long way to go.

The plan for the next several weeks is for him to be discharged Friday January 4^th and start in-home therapy Saturday January 5^th. He will have three hours of therapy three days a week. After completing the in-home therapy, he will be enrolled into an outpatient DayOne program at Mt Vernon that will help him transition back into the community.

4 days till…

I’m almost positive that this is the busiest time of the year for most of us. We all rely on this website for updates, well wishes full of hope, inspiration and forward movement. So, while I’m baking cookies, making fudge, wrapping gifts, trying to sell houses in a market that just won’t cooperate, decorating, taking care of the dogs and Emily, last minute shopping with Nate and spending every moment in between with Michael, a few days may slip by between updates. Fah la la la la la la la la

Michael is holding his own and now humming “I can see clearly now…” as he looks across with the room with clear vision. The long awaited glasses were delivered late Thursday afternoon. His blood pressure was high this afternoon, and every now and then that blood pressure is a gentle reminder for us that Mike is not out of the woods. Please remember that over-stimulation is still a huge factor that works against his ability to progress.

We are all so excited to be a part of Michael’s journey and it’s so easy to get caught up in the moment, especially if you haven’t seen him in awhile. I love being able to see the positive energy cultivating when visitors realize how far he’s come. His level of progress is inspiring and the rush of emotion is hard to contain. It’s so much easier for me to read him and to be in touch with his needs because I’m there every day. So, don’t feel uncomfortable if you’re not sure…I’m a phone call away, just ask.

This is what I’ve learned so far;

20-30 minute visits are fine, if the mood is mellow. If you know that you’re really excited, then you’re probably talking too fast, too much, or too loud. Step out of the room for about 15 minutes and slow your roll.

If there are more than two people in the room at a time, take turns talking.

Short conversations are best, with breaks in between.

You may notice that his answers are not always correct or true. It is ok to correct but probably better to revise the question and give subtle prompts if you know the answer.

Although at first glimpse he may seem ok, he has at least a year of rehabilitation to go, the least of which is physical. It’s so easy to lose sight that he still has a serious brain injury.

Just be yourself, he doesn’t need to be entertained.

We will be at the hospital Christmas Eve and Christmas Day spending our holiday with Mike. We welcome all of you to stop by and share family time with us as you travel to and from your own family festivities. We are very blessed to have Michael with us and we know your prayers and the grace of God are what made it so. We wish you the merriest, most blessed Christmas ever.

xxoo

job well done

There was probably a little “too much stimulation” concern for Michael’s participation last night but he did better than fine.  Intimate visits with friends and family help heal and are necessary but to see Michael surrounded with that much love and laughter warmed my heart.  He was so alive, so on point, so funny and so happy!  Thank you for making it an evening I will always remember.

This week’s update from the round of therapists brings confirmation that Michael will be home in two weeks.  There was a blend of good news and bad news.  Part of the good news, is part of the bad news.  Michael is more confident and more comfortable each day.  The knee is healing, he’s able to put more weight on it and as a result he feels confident in transferring himself.  This is not good!  He may have the physical strength but is far from being balanced enough or clear enough to get up and go on his own.

Yesterday, one of the therapists found him in the other bed in his room.  The day before, I had taken him to the bathroom and as soon as I walked out of the door to give him privacy, he got off the toilet and went back to his wheelchair.  Great news…NOT!  This will be tough for him to grasp…do you think Michael wants to hear that he can’t do something?  Has he ever?  You tell him he can’t do it, you better consider it done.  Until Michael actualizes his limitations, there is the likelihood that he will unknowingly place himself in great danger.  Restraints anyone?  For you very serious folks…that was a joke.  Just kidding.

Michael says that his knee still hurts.  With this brain injury, the therapists are not able to perform true tests to verify if, what, where the knee hurts.  His doctor suggested they start him on Cymbalta to see if the pain is a nerve association that may not be related to actual pain but a reactor from the brain injury.  With any medication, it will take a week or so for them to see if there is improvement.  His daily dose of Cymbalta began yesterday.

Their forecasted goal for discharge is to get Michael to a 25% assistance level with everything but stairs.  He’s at 75% assistance for stairs as of yesterday and in two weeks, they hope to see the need for only 50% required.

They are pleased with the gains this week and feel that he is back on course.  We have our last family meeting on the 27th at 2pm and then a week and a day later…Michael will be home.

Focus

An interesting conversation with Michael’s speech therapist yesterday that helped possibly answer a building concern the team, family members and some visitors.  The team members (recreational, physical and occupational therapists) feel that Michael’s cognition (thinking and reasoning) has gotten worse rather than better over the last few days.  I think we’ve all attributed the heightened confusion to the general anesthesia (knee surgery) but Kellie (speech therapist) says different.  She says the more he speaks, the more pronounced and visible the impairment becomes.

Michael is using more words when he speaks and now has the ability to form sentences.  However, the thoughts projected through those words are not always clear, true or relevant to the subject.  The production of speech is impaired due to the frontal lobe injury to his brain and as a result, Kellie feels he has either Apraxia or Aphasia and maybe a little of both.  There are day-to-day, even minute-to-minute fluctuations in his ability and I can only imagine the frustration Michael feels when the thought formed in his head, is not the information that leaves his mouth.  Actually, I can’t imagine.

Anyone that knows him, is well aware that Michael lives for the debate.  Sports, religion, politics, finance, whatever…the art of communication was one of Michael’s greatest strengths.  He loved to passionately argue his point.  Although speech therapists will continue to work with Michael, the bundle of cognitive deficits (and there are many) will most likely be the battle he will fight hardest to overcome.

Remember the good ole’ Rancho Los Amigos Scale?  He’s still climbing and in between floors…

Level V – Confused, Inappropriate, Non-Agitated: Requiring Maximal Assistance.

http://www.neuroskills.com/rancho.shtml

Level Vl – Confused, Appropriate: Moderate Assistance.

Personal thank you’s – it’s the season and it’s my birthday, it’s ok.

Bobby – for unconditional love, for always finding a way, and for endless patience and understanding.

Nathan – there are no words to express the depth of my love and respect for you.  My bohemian child, you are my heart.  For choosing Sylvette, who’s inner beauty shines just as bright as her amazing, natural beauty does on the outside.  To the future mother of my grandchildren (I dreamt of twins), you are a Godsend to our family.  If I could have chosen, I would have hand selected you myself.

Emily – for the beauty and bounty of love you give, not just to me but the whole family.  My little princess.

My mother – for instilling the importance of grace and dignity and having faith in God.  For talking the talk and walking the walk…you exemplify the meaning of a Christian life.

David and Mary – for working hard to make our blended family strong, full of mutual respect and most importantly full of your love and support.

And to the one that still holds Michael’s heart …thank you for being there.  I love you baby girl.

xxoo

Happy Birthday

Happy Birthday Sweetheart!!!! Mike, we did it. We pulled off a small surprise birthday party for your Mom. She loved it and she did not have the slightest idea. My trip is going good and San Diego is nice but not as nice as sitting by your bed looking out onto those rolling Virginia hills. I love you, miss you and will see you on Friday.

Thank You Nate, Sylvette, Emily, Jennifer, Mary and everyone else for helping pull this off.

Save the drama…

The purpose, the intention of this website is to ”log” progress.  To report Michael’s recovery and rehabilitation whether good or bad.  This wonderful vehicle is a way for us to communicate with each other but more importantly, this site is for Michael.  A journal of hope and of miraculous healing.  A daily accounting of life after October 21, 2007 when severe head and traumatic brain injuries changed the course of Michael’s life forever.

It may not always be politically correct, it may not always appeal to the masses, but it will be a resource for Michael when he’s able to look back.  An accounting of ALL the struggles, of set backs, of confusion, of heartache, of courage and comedy along the way as he picks up the pieces of his broken mind.  To be able to look back to the beginning, to see the incredible milestones, to read the overwhelming outpouring of encouragement and hope, will optimistically be as inspirational to Michael as it has been to us.

A reminder of the devastating injuries sustained and the prognosis that much of the damage may be long term, we are thrilled that he has memories at all.  Short term, long term…he is remembering more and more.  With each new day comes a better understanding of who he is and how he fits in the world.  He is remembering and understanding more of his life as it was.  No matter what, this is a good thing.

I, we appreciate each and every one of you and the time you take out of your day to check the blog for updates.  We appreciate your love, your support, and your prayers.  Thank you.

LIVESTRONG Michael.

I’m Ok

How do you get through the tough times? With humor. There is not one situation when Michael knows he said it wrong or did it wrong, that he doesn’t respond with laughter. He doesn’t get stressed out, he doesn’t get frustrated, he doesn’t give up, he just laughs and tries again. We could probably all learn from his approach. Laugh it off, don’t take yourself so seriously.

With a little push, we finally got his nurse to remove the original wrap and ace bandage from the surgery on his knee. Mike is still feeling discomfort and pain with it, but his knee looks good. Only three small incisions that should heal in no time.

Michael’s strength is returning and with each day we see his cognitive ability working toward pre-knee surgery levels.  There are fabricated tales, a little more coaching talk to himself as he tries to navigate physical movement, and there seems to be a low energy threshold but he’s still smiling.  Mike will tell you that he’s getting bored, enjoys visits with friends and family, loves physical therapy and is looking forward to going home.

I listen to Michael humming a tune as he tries to calm himself, something to get him through the functions in the bathroom that for right now, he has to share with his mother or his brother or a nurse because he cannot be left alone.  He is humbled, he is embarressed and he hums.  ”Are you ok Michael?”, I ask from just outside the door, then crack it just a bit so I can see his face.  ”are you ok, Mom? he asks and then smiles.  “I’m ok Michael”.  We’re all ok.

We’re 10 days from Christmas without Michael at home.  I asked him this morning if he had thought about what he wanted for Christmas, he said “well, I think I would really like a shower and a haircut”.  Not a long list of the latest and the coolist, just a simple shower would mean alot.  The true meaning of Christmas gets away from us and as much as we try to remember the reason for the season, the retail gratification overcomes us.  “Santa Claus is coming to town” is the song we sing as we spend thousands of dollars on friends and loved ones. When Shannon was leaving today, he said he was headed to his Grandmother’s house to be a part of the family tradition of baking christmas cookies together.  Looking back on Christmas ‘07, I bet Shannon’s family will remember the time in the kitchen together and not the new watch or the new jeans they find under the tree.  How precious each memory becomes when that Grandmother, father, sister, brother is no longer with us.   Michael won’t be home this Christmas, but he is still with us.  Thanks to “the reason for the season”, Michael is alive and is recovering.  I’m pretty sure that was on our Christmas list.

I’ve always loved Silent Night, but from the first time I heard it, Celine Dion’s version of “Oh, Holy Night” became my favorite Christmas song.  As Michael smiles a little larger, laughs a little harder, and hums a little louder the presence of the spirit rings ever more true.  “a thrill of hope, the weary world rejoices.  For yonder breaks a new and glorious morn!  Fall on your knees, oh hear the angel voices…”

All cleaned up

After a late night visit from Santa last night (he kind of freaked Mike out a little, but my brother’s kids loved it) Michael got an early gift.  He had a shower and a fresh new haircut before the days end.  What a difference!  Brain injury or no brain injury, cleanliness has always been important to Michael and he felt so good after the clean up.

To his delight, Mike had many friends and family visitors over the weekend.  It was interesting to watch his reaction when he saw each person walk in the room. His facial expressions are easy to read and you learn to watch body language when verbal communication is not primary.  Most, but not all people are met with big smiles and a ‘hey, what’s up?” with their name in the greeting.  I noticed a different response from Michael today and it was a bit unsettling.  When we were alone, I asked if everything was ok.  His first response was “yeah, everything’s ok.  Everything’s fine.”  I told him that asked because it seemed like something was wrong, something was bothering him.  Was he in pain?  Did the haircut bother him, considering he has a head full of healing incisions, you never know.  Was it too much?  He then told me that a certain visitor bothered him.  That the visitor brought feelings to him that he didn’t like.  It made him angry and that he did not consider this person a friend.  I asked if he wanted me to tell him not to come back.  He said “yes, please. I do not want him to come back”.  Michael is remembering more and more each day.

At the end of the day, he was tired from the busy weekend but not too tired to hang out with one of his best buds for the late night Skins game.  Although not quite the same (there was no beer and they were in a hospital room) they settled in to watch the game like they had so many times before.  The band of brothers is strong for these guys.  If you’re in it, you’re in it.  If you’re not, you’re not.

Balance

Nathan writes the most amazing poetry. It is colorful, rythmic and passionate. His poetic melodies are like blood running through veins to the heart, warm and with purpose. Although still private and unpublished, his works of late are rich with soulful descriptions of the emotional toll days with and without Mike take as he faces the reality of his brother’s brain injuries. Words are just as theraputic and healing for the writer as they are for the reader. We’re all healing and getting therapy with Mike.

Today was a better day than the day before. It is now clear there have been minor physical and mental setbacks from the knee surgery on Monday. Michael has about a week of catching up to do but his therapists are still hopeful that he’ll be going home just after the new year.  Walking on his own in three weeks? No. Able to take care of himself in three weeks? No.

Michael will start an in-home therapy regimen and then graduate at some point to out-patient rehab at Mt. Vernon.  There is every indication that Mike has a full year of rehabilitation and recovery ahead of him. We were told on Thursday that this is still a very serious situation and the slightest illness can cause another setback.  A friendly reminder for everyone visiting to wash your hands as you enter the room and if you’re not feeling well, just give it a few days before your visit.

We’re not exactly sure how Michael feels about his situation.  He’s not to the point where you can consistently trust what he says.  When he moves, there is obvious pain still associated with his knee but if a doctor or a nurse asks him if his knee hurts “no, not particularly, it’s fine”.  Knowing that a couple of people have stopped by you can ask Mike if he’s had visitors… ”no, no one has been by”, what did you eat today “I haven’t actually eaten in a couple of days”.  Sometimes though if you call him out on it, he’ll smile, sometimes laugh out loud knowing that what he said wasn’t correct or what he meant to say and then correct himself.  The healing brain has a sense of humor.

These are trying times for us.  Michael’s accident will affect him for the rest of his life and has changed our lives as well.  It changed our lives, our relationships with each other, our direction, our focus.  My career, my clients, my friends have had to take a back seat to this horrible thing that happened to Michael and to our family and I honestly struggle with balancing priorities.  Although I question myself, at the end of the day I know I am where I’m supposed to be.  I am by his side through this journey but I will find the balance.

The decisions we make, that one reckless act, can affect you and everyone around you when it goes wrong. Your family, your friends, your career, your future is changed forever.  FOREVER.

Confusion

There is confusion after the general anestesia. Mike is having a harder time differentiating between what is real and what is just in his head. His voice is quieter, his demeanor is more subdued, his posture is weaker and his responses do not have clear thoughts behind them. Pain? Still effected by the anestesia? Too soon to tell.