Josh gets his cast off, hopefully for good!

Friday, July 27, 2007

Josh got his cast off yesterday.  The left arm is pretty straight now.  His fingers are still a bit stiff and he does not have the mobility that he has on the right side, but he's getting there...  They made a splint for Josh to wear at night when he sleeps so that the arm does not revert back upward.  The OTs work with Josh to strengthen the left hand and get more dexterity in the fingers by doing various exercises such as reaching up with the left arm and picking up round pegs with the fingers of his left hand and placing the pegs in holes.  It's a struggle for Josh to reach upward with this arm, but he cooperates most of the time.

We had another one of those full staff meetings on Wednesday and Josh got rave reviews again from all the therapists. Josh is "waking up" more each day and constantly says he wants to get out of there.  Yesterday he says, "Mom, did you bring the car keys?"  I tell him yes.  He says, "Good, then I am riding home with you...."  I tell him he has to be steady on his feet first and safe before he can leave.  He pleads with me...  "Mom, don't make me cry..."  Oh God, how pitiful is that?  He is so childlike sometimes...

On the other hand, the day before, my buddy Tommy from NYC came to visit Josh and they played Texas Hold 'Em and guess who won all the chips?  Josh can still play cards and he's pretty good, too.  He's a real guys' guy and enjoyed himself. 

Josh's short term memory is shot...  Dr. S says it will get better.  Josh can't remember what he did a half hour ago and certainly has no recollection of yesterday.  We've been to HBOT over 40 times and every time we go, Josh asks where we're going.  When I ask him if he's ever been to HBOT before, he always says no.  Then once we get there, he laughs and jokes with the guys working there.  This short term memory thing is scary...  everyone tells me he'll improve, it just takes time.  I hope time heals Josh's wounds...

The speech therapist made Josh a memory log.  He is supposed to write in it every day, the same old thing.  My name is________.  (He always gets that right!   Yeah, Josh knows his name.)  Today is __________.  (You're supposed to write, the day and the date.  Half the time Josh doesn't know the year.  He'll say 2006 or 2005....  I will say that I don't even know what day it is half the time.  )  I am at ___________.  (He's supposed to write Sharp Rehab Center.  Various responses from Josh when I ask him where he is:   "At Earl Warren"  (his junior high school)  "At the dentist's office"  (???)  and my favorite response of all...   "At the Four Seasons."   My high roller son thinks it's room service that brings him his meals.  When the phone rings, he says "It's room service."   He must really be starving if he thinks hospital food is Four Seasons cuisine... 

Last night we were hanging out in Josh's room when he suddenly becomes so happy to see some guy walking past his room.  "Hey Fritz", Josh yells.  "Fritzy...Fritzy.."  This guy looks like Josh's buddy Fritz who went to UofA.  I tell Josh that that guy looks like Fritz, but it's not.  "Yes, it is, Mom. "  Josh does that a lot.  He'll see someone and it will spark a memory.  He'll see an oriental guy and says it's Lester's son.  Lester is one of the golf pros at Lomas who is oriental. 

I am reading a book called Where is the Mango Princess? which is a journey back from brain injury written by a woman whose husband suffered from a TBI.  Jean, the head ICU nurse at UMC in Tucson recommended this book to me.  It is pretty amazing what this couple went through.  The brain injured husband would ask his wife "Where is the Mango Princess?"  He would also insist he was at his law office and that the fax he was sending was not going through.  He would yell and scream and call everyone f'ing idiots.  He also masturbated incessantly and was a raving lunatic....   so I guess I don't have it so bad. 

I finally went to the San Diego Brain Injury Foundation meeting last weekend and was moved to tears.  The membership consists of survivors and caregivers.  After seeing some of those courageous survivors and their incredible zest for life, I could barely speak.  I met a guy who was the victim of gang violence.  He had the crap beat out of him with a baseball bat.  His head shook like a bauble head toy.  I met a guy who was shot in the face for $15!!!  He owed some guy $15 and didn't have the money, so the guy shot him!  There were people who had strokes, car accidents, sports injuries, had fallen off of ladders...you name it.  They all stood up, one by one, and told their stories.  Everyone was kind and wonderful.  There was a table set up with all kinds of information and resources.  The number one complaint from everyone was short term memory issues.  They have resources and programs for this problem, so help is out there. 

I met a young lady who had suffered from a TBI when she was in a car accident.  I hired her part time to be a caregiver for Josh and keep him company at the hospital since I am getting so burnt out.  She is a college student and needs to do an internship at the Brain Injury Foundation.  She is upbeat and seems great.  She starts tonight... she'll do some speech therapy stuff with Josh, have him read and write a bit...she has an assortment of exercises for him to do...  Hope it works out.  I know she is a compassionate person -- she gets her elderly dog who can barely stand up pool therapy....

      

 

Josh is being tested by Dr. Hill, the neuropsychologist at Sharp

Friday, July 20, 2007

Today Josh was tested by Dr. Hill, the neuropsychologist at Sharp.  When I walked into Josh's room, Dr. Hill was reading various passages to Josh and asking him questions afterwards to see what he understood.  You really had to concentrate.  My head was spinning as I listened to Dr. Hill read all these short passages, then ask questions for comprehension.  Josh did pretty well.  Dr. Hill would say things like...."A man walks into a hotel lobby with a rope in one hand and a hammer in the other hand.  The clerk asks the man what the rope is for.  The man states that the rope is his fire escape.  The clerk then states that the hotel charges extra for guests that bring their own fire escapes." (rather ridiculous passages, I'd say...)  Then, Dr.Hill would ask Josh if the man was carrying a suitcase when he walked into the lobby.  Dr. Hill also tested Josh's hearing and eyesight by doing various exercises.  He also had Josh read various passages outloud,  do math problems and write simple sentences.  Josh is definitely a team player.  A couple of times I just got ridiculously silly and had to restrain myself from laughing hysterically. 

Cindi, Josh's OT, had Josh's left arm re-cast for a third or fourth time (can't remember now).  This time they really straightened out Josh's left arm and it was rather painful for him.  Josh was making crazy faces at Cindi as she straightened out his arm.  Cindi would say, "Josh, why are you making those crazy faces?"  Josh says, "I am showing you my pain...."  He's comical.  I think this is the last time they are recasting Josh's arm.  The botox is kicking in and he is getting more mobility in his fingers.

Last weekend Kristin came to visit Josh.  He remembered her, was happy to see her and was asking about her other sisters.  Josh then tells Kristin he had breakfast with Russ at Einstein's that morning....  That confabulation thing again.... 

Speaking of confabulation, Josh was insisting yesterday that he had another therapy session and was insistent that we go to the gym...  I mean insistent, yelling and carrying on, cursing...  I wheeled Josh around the hospital grounds, then went back to his room.  He was still carrying on to the point that several nurses came into the room to try to see what was up...  Finally, I put on the movie, Happy Gilmore, and he settled in.  Cool, calm and collected, finally....   Gosh, I have so much to look forward to when Josh comes home...  He better get everything rearranged in his brain and become more reasonable.  I hope this confabulation thing passes because I WILL SURELY GO MAD!  I finally took off a day last Thursday and went to the races.  It felt good to forget about this whole mess for one day...  I am burnt out and need a break...

Josh gets mad at Natalie alot. When she doesn't do what he wants, Josh swears at her and gets her upset.  When Josh is mad, he speaks clearly and everyone can understand him.   It is difficult to be patient with him.  Natalie is a trooper. HAPPY 17th BIRTHDAY, NATALIE.  (7/22/07) Happy B'day to Carrie as well and happy wedding to Michael in Chicago!!!  Wish we were there for the festivities!  Have fun without us!

 

 

 

Josh and Natalie

Saturday, July 14, 2007

Next to Natalie, looks like Josh needs some sun! 

Josh has his father on the brain....

Friday, July 13, 2007

I arrived at Sharp late afternoon.  Josh is in his wheelchair hanging out with Cindi, his OT.  She just shaved him and he looked quite handsome.  Cindi said Josh had been up all day.  Now that Dr. S. has cut down on his meds, Josh sleeps a lot less.  This is a good thing since he needs to be up during the day and sleep at night.  Josh was in a good mood. 

Dinner arrived.  Josh is truly enjoying food.  Elizabeth, his speech therapist, said that often times after a brain injury a patient will not know when they are satiated (full).  They'll keep eating...  She doesn't seem to think this is Josh's case, but she's not sure...  Josh has all his foods mixed up.  He'll be eating a piece of pineapple.  I'll ask him, "Josh, what are you eating?"  He'll say an eggroll."  I'll say, "Josh, is that an eggroll?"  He'll look at it and say "No, no, no, it's pineapple."  He repeats his words and has a slight stutter.  Everyone once in a while, he'll start speaking Spanish. 

Josh finishes dinner.  I put in a movie and we're watching "Oceans Twelve."  Josh is staring intently at the movie.  I don't know if he's understanding what's going on, but it surely looks like he is.  Lately I've been watching movies in Josh's room.  Sharp has a pretty good movie library. 

Josh is pretty calm today. I ask Josh if he wants to lay down and he says yeah.  So, he stands up.  I am holding him by the back of his pants since his balance is off.  He tetters and shuffles his feet.  We get over to the bed.  He's telling me to let go of him.  He manages to get into bed and is chillin' watching the movie when he suddenly says, "Mom, I'm not staying here tonight.  I am sleeping at Dad's..."  

How sad is that???  

Dr. Stenehjem comes in and I tell him about Josh constantly talking about his father.  He says that Josh will eventually sort everything out.  He says he has all these memories and thoughts that are discombobulated, but they'll fall into place in time.

I think of Debbie, across the hall from Josh, who got nailed by a 16 wheeler.  She tells her husband, "Let's go outside for a smoke."  She never had a cigarette in her life...  

Yesterday we had our second rehab meeting with the full staff.  Everyone said Josh was progressing nicely.  Dr. S has put Josh on an anti-Parkinson's drug to help with the shakiness.  The damage to the basal ganglia which has to do with fluidity of movement and balance took a hit.  Hopefully this drug which is experimental for brain injuries will help Josh.  Dr. S also ordered the removal of Josh's feeding tube today.  So....Josh is no longer on any life support of any kind!   

 

 

Josh gets botox today and devours his first candy bar in over three months!

Monday, July 10, 2007

Dr. Stenehjem injected botox into Josh's left wrist to straighten out his fingers and allow for more mobility.  He was also re-casted today to further extend the left arm.  His OT's, Cindi and Sara, signed the cast.  The cast is rather awkward and weighs Josh down a bit on the left side especially when he walks, but it's only temporary.  Hopefully it will do the trick and give him more mobility.

Josh has food on the brain big time.  Today his speech therapist, Elizabeth, took him to the vending machine and bought him a Butterfingers candy bar.  He devoured it in two seconds.  Josh still has to be monitored when he eats to make sure everything is going down correctly.  So far, so good.  Soon he'll be upgraded from diced foods and thickened liquids to normal food and drink. 

Today four of Josh's buddies from school came to visit - Dante, Rocco, Michael and Shawn.  They were pretty impressed with Josh's progress since they hadn't seen him in a while.  At first Josh acted like he didn't know them.  Then he started laughing and said hi to each friend by name.  Josh continues to mess with us and makes everyone laugh.  Later on in the day when Josh was in bed, he looked at me and said, "You look like my mother..."  Then he cracked up laughing.  At least he's in a good mood.

Before I left, Josh tells me, "Mom, bring me rollos and a protein drink with zoom..." (whatever that is?) 

    

Josh gets rave reviews today!

Friday, July 6, 2007

I arrive at Sharp around 11 a.m. and Josh is in the gym with his occupational therapists, Sara and Cindi.  They are working out his arms and lifting them high above his head.  Josh is acting appropriately and is totally cooperative.  Then they get Josh up and work on throwing balls.  Throwing is very difficult since Josh's fluidity and movement is not automatic.  Josh gets into the throwing position lifting his arm, pulling it back and then he freezes in that position sometimes for minutes....   finally he throws the ball.  He's getting much better at this.  He tries to psych himself up counting 3, 2, 1...before finally releasing the ball - this is motor aphasia, that delayed reaction. 

Josh is determined.  If you try to help him, he tells you not to.  If you're playing catch with him and you try to get closer to help him out, he tells you to get back.  This is a good thing.

Dr. Stenehjem arrives and tells us that he has cut Josh's blood pressure medicine way down, almost in half and that he is doing well with that.  He tells us Josh is doing great.  He tells Josh to open up the fingers of his left hand and Josh does it.  Dr. S asks him if he wants to take a break or continue working and Josh says he wants to continue working.... 

I bump into Elizabeth, one of Josh's speech therapists, in the hallway and she tells me Josh is doing incredibly well.  She hadn't worked with him in a few days and she could see the progress.  She said he was at about 90% responding to her questions whereas a few days prior he was at about 60%.  This is all music to my ears! 

After OT, we're all hanging outside in the garden area with Josh, my girlfriend Susan Magee and her daughter, Magee.  We're all shooting the breeze talking about people that Magee went to school with.  She's twenty and is a student at UC Berkeley.   Josh is understanding everything and is participating in the conversation.  He seemed to be enjoying himself.   Then we changed the conversation to Josh's favorite foods and he started talking about steak and lobster, Board and Brew in Del Mar and Roberto's Taco Shop. 

I gave Josh a Naked Juice smoothy and he practically inhaled it.  Then he said he wanted another!  He said it was great.  Then very casuallyJosh says he wants to use the restroom.  I wheel him back into his room.  He's getting up from his wheelchair heading to the bathroom.  He tells me to close the door and get out.  I call the nurse.  They help Josh and he does what he needs to do.  I don't want to act like an idiot and embarrass Josh, but I ran to the nurses station, made the announcement and everyone clapped!    Josh is on his way to being totally independent!   When you are totally well, Josh, I hope you never read this blog because I know you will kill me! 

Josh had dinner, got situated in bed and watched the World Cup on ESPN.  We'll see what tomorrow brings....  

By the way, we haven't had hbot in three days.  I intentionally cancelled his appointments since I wanted to see if I could see a difference in Josh.  It appears that he was more cognitive, more reasonable and appropriate in the past few days.  We are going to hbot Saturday.  If he acts crazy after the treatment and seems to regress I will have to reconsider continuing or just do tuneups twice a week and access the situation.   He's approaching the 40 treatment mark.   

Josh takes on the stairs today!

Tuesday, July 3, 2007

Josh takes on the stairs today with PT, Erin.  He also did 20 squats and walked across the room with help.  He does well with Erin and is always cooperative with her.

Today they recast Josh's left arm.  They are slowing extending it downward so he will have more mobility.  They leave the cast on for several days in one position and then recast to another position until they are satisfied that the arm has the mobility it needs. 

Josh did well with his therapies this morning.  Then on the way to hbot he looks at me and says, "Mom, we have to call Dad and tell him what happened..."  Oh man, I am thinking....how do you handle this one...  I don't want to upset Josh but at the same time I don't want to lie to him.  Here's that confabulation thing again.  I just tell him the cell phone needs to be recharged.  He insists for a while that we call and then finally drops the subject.  

When we arrive at hbot, Bob Sands is there and he is thrilled to see Josh.  Dr. Tuomi is also there and he can't believe it when he sees Josh.  Last time Dr. Tuomi saw Josh he was in a coma.  All the guys are telling Josh how great he looks and then Bob presents Josh with an Australian flag which Australia won in the America's Cup (or something like that...).  It's a flag with a kangaroo with boxing gloves.  Josh thinks this is the greatest and is very gracious toward Bob thanking him and telling him how he really appreciates this....  

Josh goes into the chamber and is fine for a while.  I am sitting with Dr. Tuomi and all of a sudden we hear, "Open the door....get me out of here...."  Josh is screaming at the top of his lungs.  I go over to the chamber, press the speaker button and tell Josh to calm down, that he is getting an O2 treatment and needs to stay in there for a while.  Josh insists on opening the door.  We finally calm him down for a while but eventually have to cut his treatment short since he is being so unreasonable.   Josh then tells me, "Mom, give Ivan (the hbot tech) 20 bucks for opening the door...."  Everyone laughs.

I asked Dr. Tuomi how to handle Josh's confabulation incidents and he said to be as "factual" as possible unless Josh is acting totally off the wall.  For example, when Josh asked me to call his Dad,  I could have asked him what year we were in and then explained that Dad was sick in 1997.  Perhaps a statement like that could  make the right connection and Josh would recall what happened.  

We'll see what tomorrow brings.  How about a monumental breakthrough and an unprecedented miraculous recovery, Josh!  I am sick of this marathon...