Tuesday, October 21

Routine Is Good

Today started with the normal routine of meds, a visit from Dr. K and getting dressed. Paula came in at 9am for an ADL session focusing on washing hands, brushing teeth, combing hair and all other typical hygiene tasks. Unlike those of us with desk jobs, the therapists get reality checks everyday and understand and appreciate the smallest things in life, like being able to put socks on without assistance. Now that Jackie’s glasses are helping with his vision it is easy to see that his brain not only wanted to forget Jackie’s left eye, but his entire left side. This left neglect is something that can be worked on daily. Paula continues to put everything on Jackie’s left to force the brain to see and react to stimulus on that side. She also sat with Jackie while he ate his oatmeal making sure he looks down to see where his spoon is going. Before his glasses, he would not even look down and just felt where the bowl was with his spoon. We are making progress. PTL

His independent time went well. The staffer who oversees the room is a very loving person and has put my mind at ease about leaving Jackie by himself. He has been playing some games with different patients and listening to his music or watching TV.

PT and the Vector were next. Jackie continues to have good trunk and head control while walking and continues to work on his left leg movement. Patience is key. Jackie went to the dining room with Becca immediately after and ate well. PTL We helped him get in bed for a nap and then he finished up his speech session with Becca using the iPad as a tool.

The rest of the day consisted of snacks, nutritional supplements through his feeding tube and more snacks. Jackie gained three pounds within the last week. PTL We stayed in the room, watched some TV and then it was time for bed. A routine but good day, we will take as many of those as we can.

“Whether you believe you can do a thing or not, you are right.”
~ Henry Ford

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Monday, October 20

Pieces

I’ve been reading some books during the night while sitting by Jackie.  This is atypical for me as I always have to be moving. Sitting and reading a book has never kept my mind where it needed to be.  Things have changed.  I guess when you truly find something you enjoy reading it will keep your attention.  Jim  downloaded the Kindle app on our iPad and we have added many books to the library, most TBI related and others about service dogs.  In one of those books there was a reference to PTSD (post traumatic stress disorder) and it seemed to perfectly describe TBI as well.  It equates it to a snow globe. Everything gets shaken up and every facet of your life and physical being is floating in the air and out of your reach.  With hard work the pieces will come down, and recovery will occur, but the pieces will never fall exactly where they were. It is not better or worse, it is just different. Wishing for the ‘old ‘ you or loved one is the worst thing you can do. Accepting and embracing the new ‘you’ or loved one is truly a blessing.

Jackie’s day started with a visit from Dr. K and team.  We were excited to share Jackie’s progress over the weekend with him.  The morning then flowed into its normal rhythm of getting dressed and ingestion of morning meds.  Then it was off to speech with Becca.  When the two returned to the room Becca said it was a beast session. We told her she had to come up with another term since Erin has already claimed that for her PT sessions with Jackie.  Becca then quickly came up with rock star and that fit.  Jackie was very attentive and focused in her session.  He used all verbal responses and never had to revert to a thumbs up or down.  She decided to have Jackie try some of the oatmeal I used to make for him in the mornings.  When I dropped it off at her office I knocked on the door, opened it and Jackie immediately turned his head to see me and said, “Hi Mom.”  I know many of you hear these words all the time, but for me it was like I heard them for the first time.  Jackie is starting to come out of the fog again.  PTL

Immediately after speech Jackie had a follow up eye exam.  His prescription glasses came in and they seem to be working much better than the temporary pair he was using.  The doc confirmed that the prisms are forcing Jackie’s brain to recognize the left eye.  It is not an overnight fix.  It will take a while and many different lens updates until we ultimately know the extent of Jackie’s vision loss.  We plan to follow up with the doc in a couple weeks.

We took Jackie to the common area for his independent time, but he was there only a few minutes before Mark came to pick him up for PT, Erin will be back tomorrow.  Jackie had a good session mixed with stretching and a little bit of walking.  Even with the weekend stretching, Mark mentioned that Jackie’s muscles were tight. As Mark was wheeling Jackie out of the gym and through the fourth floor lobby he ran into Jim and I sitting with another couple. We had a surprise visit from two very dear friends of the family.  Gary was the preacher at my mom and dad’s church for a long time before he ironically moved to lead a church in Bloomsburg, the same town of Jackie’s university. He was a spiritual rock for us during the many touch and go days at Geisinger hospital and has continued to visit Jackie at Jefferson and Magee.  It was wonderful to see both of them!

Nana arrived shortly after and so did Visa, the service dog from Jefferson.  Jim and I took Jackie back to his room and let him visit with Visa and her human mom Jane. Jackie enjoys petting her, it relaxes him and makes him smile.  Two huge things when it comes to therapy.  After the visit we spent some more time with our visitors and then Jackie rested for a bit before OT.

He then took an early shower but returned to his chair for a mashed potato and gravy snack.  We watched a little TV and then helped Jackie get in bed for the night.

We continue to take things one day at a time, celebrating the fact that at each mile marker of Jackie’s marathon, more and more pieces are starting to fall into their new place. PTL

“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in. That’s what this storm’s all about.”
― Haruki Murakami

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Saturday, October 18 – Sunday, October 19

Weekend Update

Saturday started with Recreation therapy and Wii golf.  We used a family room on the floor with a large screen TV and as always Jackie enjoyed the time with Jenna. We then headed back to the room and Jackie ate a morning Magnum bar.

Before long it was time for PT.  To help make Jackie’s week day therapy sessions more productive, weekend therapy sessions have been scheduled to focus on stretching.  The goal is to try to keep Jackie’s muscles as loose as possible.  His left arm is always tight and stays in the bent position for most of the day.  It was so tight on Friday, that he could not even use the robot for exercises.  We all keep working with Jackie to try to tell his brain to loosen instead of tighten the muscles in that arm. Sometimes it works but unfortunately doesn’t last long.  As with everything TBI related, patience and time are needed.

Jackie got some noontime meds and rested.  He stayed in bed while a good friend from home and his Mom came to visit.  After some catching up we all moved to the terrace.  The guys had Magnum bars.  Jackie ate very well and I think that his friends visit had something to do with that. It was great to see them.

Later in the afternoon I did some laundry and the boys did some stretching.  The therapists have shown Jim the correct way to stretch Jackie’s muscles. It is not as good as if the therapists stretch them, but still helps in the overall picture to keep them as loose as we can for as long as we can. A shave and shower was next and finished up the night.

Sunday also began with Recreational therapy.  Before Jackie worked with Jenna there were some morning routines to complete including getting ready. It was amazing, on one occasion Jackie used his left had to hold on to the object so the right hand could take off the cap. PTL. Slowly but surely the left side is engaging. Jenna took Jackie up to the greenhouse on the sixth floor to paint a pumpkin.  Jackie was attentive the entire time and we brought the festive pumpkin back to his room.  Speech started in half an hour.  Jackie had met this particular therapist once before.  She decided to have the session in his room.  Since Jackie was hungry he decided to have a magnum bar during the session.  It was a great way for her to evaluate his swallowing function. When we found out that she was fluent in English and Spanish I asked Jackie to say something since he took the language in high school. He said, “Hola.”  Then I thought I would go a little further and asked him to ask how are you in Spanish and he did.  PTL

Due to a slight change in the schedule, Jackie went to the gym for OT immediately following speech.  Brian and Jackie focused on stretching,but also played the sports team logo matching game created by Pete, the past PT student at Magee.  Using this game made Jackie do some stretching of his trunk and arms to place the correct team name on the right logo.  It was another good session.  PTL

Jackie’s noon nutrition and nap were next.  We could tell Jackie was tired even though he did not sleep much.  We let him stay in bed longer than normal.  He actually started using the bed functions to raise and lower his head.  Getting comfortable is another story.  It is difficult to lower his left arm so it is always curled up under his pillow and he cannot bend his left leg when it straightens out.  We usually help reposition so he can sleep better.

After getting up we decided to go back to the family room to play Wii bowling and golf.  Jackie continues to get better at using the controllers and on screen commands, a sign that his gross and fine motor functions are starting to come back. PTL

We wrapped up the weekend watching some football and Comedy Central and eating take out.  Jackie enjoyed his mashed potatoes and gravy. The weekend revealed some progress in Jackie’s initiation and abilities. PTL We will continue on with prayers, positive thoughts and patience.

“A dream doesn’t become a reality through magic; it takes sweat, determination and hard work.”

~Colin Powell

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Friday, October 17

The Road Back To Independence

Today we continued to implement phases of Jackie’s new rehabilitation plan; the focus was independence. Either Jim and I have been with Jackie every day and night since his injury in February.  As a test, our team at Magee wanted to see how Jackie would do spending an hour away from us.  They took Jackie into one of the common areas and had him spend some time with another patient close to his age. They participated in an activity together supervised by a rec therapy student and the staff member assigned to the common area.  Jackie’s nursing staff also did random checks in the room.  At the end of the hour Jackie chose to just chill out and listen to music while weight shifting in his chair.  The first test had gone well and the plan is to continue the same schedule next week.  I have to admit this is hard for Jim and I.  Jackie has been through so much and Jim and I have been right beside him the entire way serving as his support system and advocate.  We know him better than anyone else and can read him and know how to handle whatever may come up.  Even stepping away for an hour, when we know he is not in therapy, seems unnatural and is difficult. It is; however, part of the recovery process and the best thing for Jackie, after all he flourished when he went to Bloomsburg Freshman year.  He made tons of new friends who became his family away from home and took care of everything on his own from buying books, researching his computer purchase, dropping and adding classes, getting to meetings and completing all freshman requirements on time.  We want him to get back to being able to do the things he did before.  We just need to trust the staff at Magee and let Jackie get a taste of the independence he came to know and love.

Becca split her speech session in half.  The first half started in her office but then she helped Jackie transition to the common area for his hour of independence.  Then she met with him again at noon and had ordered him a cheesesteak and fries from the cafeteria.  She was curious and wanted to see how he would eat something he really enjoyed.  He took a couple bites of the meat and ate a couple fries.  He tired quickly so they stopped.  She is keeping him on a restricted diet for now which basically just includes cold, soft foods that he enjoys eating.  We are all hoping it will not take long to get him back to eating regularly again.

His PT and OT sessions both included stretching exercises as Jackie’s muscles continue to be very tight. We spent some time on the second floor terrace and Jackie enjoyed his Magnum bar.  Then we went back to his room and had our first official mentor meeting.  The young woman who I spoke about before, who had a brain injury from a car accident, spent about half an hour with Jackie. We were right next door talking with her Mom.  Among other things, Jackie played table top corn hole with her.  He said he enjoyed her visit.  We will likely schedule more time for them to get together before we head home.

Jackie was exhausted, we helped him get into bed for the night.  The day was long but good, in fact looking back it was a good week.  PTL

“Start by doing what’s necessary; then do what’s possible; and suddenly you are doing the impossible.”
~Francis of Assisi

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Thursday, October 16

Five Months At Magee

Today marks five months at Magee.  Granted Jackie has had many trips back and forth to Jefferson which have equated to a little over three weeks.  That is not counting the 44 day initial trip to Jefferson after spending less than a day at Magee on April 2.  It is amazing how the months have ticked away and funny how you lose all track of time when your mode of operation is day by day.  We definitely have had many moments of great sadness but choose not to focus on all the time that Jackie has lost. Instead we are looking forward to all the life he has yet to live and feel very blessed that his 19 year old brain is forgiving and starting to heal.  PTL

Jackie’s Thursday started with a visit from Dr. K.  He continues to see improvement and is excited about the progress Jackie is making. The rest of the usual morning routines kicked in and then Jackie went to Speech with Becca.  Yesterday Becca had run into Jackie in the gym and had asked him what he wanted to do in their next session.  He said he wanted to watch ESPN and eat marshmallow peeps, and that is exactly what they did.  Jackie also ate a couple bites of breakfast foods in an ongoing review of Jackie’s swallowing function.  Ultimately it will just take a while for his muscles to get back into shape before he returns to full function.

We relaxed in the room after speech, did a weight shift and before we knew it, Erin was there for PT.  She stretched Jackie’s muscles prior to helping Jackie walk in the gym.  Grandma and Grandpa were here today and we caught Jackie walking along the wall.  He doesn’t hold onto the wall, it is used as a support for his body when he weight shifts.  Jackie’s head and torso are getting stronger each day. PTL It is not as easy for him to move his left leg when he is walking in the gym vs using the Vector.  The Vector lifts a little of Jackie’s body weight for him, making it easier to swing the left leg into position.  In the gym, Erin continues to put Jackie’s left leg in place for him.  He benefits from both types of walking exercises as they each increase his strength and helps force his brain to make the necessary reconnections.

After PT Jackie rested in bed.  He had problems sleeping and I’m starting to think that this will be the pattern and just getting out of his chair and resting in a quiet environment will be what he needs to recharge for the afternoon.

Jackie moved to OT next with Paula and then immediately went to a group meeting.  Several other patients were invited to the meeting and the information shared was about TBI.  He attended one of these sessions before, but has not been physically or mentally able to return until now. Jackie raised his hand once and answered a question. PTL

We met with Dr. K and our case manager earlier in the morning and reviewed some upcoming changes to Jackie’s rehabilitation plan.  Today we are going to move from nightly nutrition to getting his nutrition in larger portions four times during the day.  This change will help simulate a more normal eating pattern and will enable an easier transition to regular meals when Jackie is ready.

As is always the case with TBI, Jackie was having a really good day and then all of a sudden complained of pain in his head. This is extremely atypical for Jackie and was also accompanied by increased muscle spasms and sweating.  Luckily Jackie did not have a fever. Dr. K was still here and he examined Jackie.  He ruled out anything major, PTL, and said it is because Jackie is working harder than he ever has before and his body is just tired.  We gave him Tylenol and helped him get in bed.  He stayed in bed for the rest of the night.  His head was feeling better and we didn’t want to risk getting him up for a shower and have the pain return.

Jackie stayed up much later than normal watching Thursday night football and then did not really fall asleep until after midnight.  It was not his best nights sleep, we are hoping he can settle into the new routine soon. Tomorrow is another day full of hope and opportunities.

“Challenges are what make life interesting; overcoming them is what makes life meaningful.”
~Joshua J. Marine

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Wednesday, October 15

Making Every Day Count

Today Jackie started out a little sluggish since his night before was not very restful.  He went through the motions, got dressed and was ready for speech at 9am. Becca and Jackie’s focus continues to be his swallowing function; however, Becca always finds a way to interject some fun into the session.

It was a rainy day in the city, but we were able to take a break under the roof on the second floor terrace. The break was good as Jackie was heading into PT and a workout on the Vector.  Erin said they had another great session.  PTL

He got in bed and rested.  OT was next with Paula and this session also went well. Jackie is starting to make consistent progress in his therapy sessions and appears to be getting stronger with each passing day.  PTL

After OT Jackie was getting hungry.  He started with a Magnum ice cream bar and then moved to take out mashed potatoes and gravy.  He tires quickly but is able to eat a good amount before he has to stop.

We watched some TV and then helped Jackie get in bed.  His nutrition runs overnight and starts at 7pm.  At one point Jackie slept many hours, now he is getting back into a normal pattern and generally doesn’t truly settle in or fall asleep until 10pm.

He had a better nights sleep than the one before and didn’t wake up until right before 8am.  I know that all of your positive thoughts and prayers are reaching Jackie and helping him make every day count.

“Success is not final; failure is not fatal.  It is the courage to continue that counts.”

~Winston Churchill

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Tuesday, October 14

Watch Out

Today was not a day of epic achievements, but was a good day.  After all, every day is a good day when we sit back and look at all Jackie has endured to get to this point.  I can tell Dr. K and his team are starting to feel more energized and excited about Jackie’s recent accomplishments.  It is not that any of us ever lost hope, just a little steam.  Dr. K usually comes in and sits by Jackie or stands very close to him and asks him age and interest appropriate questions.  Even though they just seem like normal conversation to Jackie, it is a way for Dr. K to get a handle on his cognitive gains including initiative.  Each exam this week has been a positive one.  PTL

Jackie seems like he is falling back into his normal 19 year old pattern of not wanting to get up or be really happy in the morning.  It could also be that today he had an ADL session with Paula.  I’m guessing in Jackie’s mind it would be like getting up at 8 in the morning at college and running a couple miles before his first class; not something Jackie would ever do.  Needless to say, it was time to get up and get moving.  Paula continues to work with Jackie so he can begin to do more for himself.  As with everything, it is slow but steady progress. It is this achievement of independence that will continue to drive Jackie’s desire to keep pushing through day in and day out.  After their session, Becca picked up Jackie for speech.  Breathing exercises, using a plastic contraption that you blow into to raise balls in cylinders was one of the things on tap for the session. I remember my Mom and Dad using these in the hospital post surgeries.  A rest on the second floor terrace was next.  The sun was strong so we mixed catching some rays with comfortable relaxation in the shade.

Jackie worked hard in PT.  Nana and John visited today and caught a glimpse of Jackie walking along the wall in the gym.  They both felt Jackie looked much more alert today.  Jim and I are with Jackie all the time so it is harder for us to see changes from day to day.  Jackie came back to the room and got in bed for a nap.  We all took turns eating lunch outside the room and then got Jackie up to finish out the remainder of his session with Paula. Jackie was close to falling asleep, but never did.

When we help Jackie sit up in bed to get in his chair, we always like to give him some time to get his bearings.  I usually sit beside Jackie on the bed and sneak a hug.  When Nana and Grandma are here, they seize the moment and take over the stabilizing role.  Today was Nana’s turn.  She was on the opposite side of the bed, saw what was going on and said, “It’s my turn for a hug.”  Jackie immediately started to pull himself up and said, “Watch out,” and then he started to laugh.  We all laughed.  This initiation of humor is another big step to healing.  PTL

After OT Nana, Jim and I went out to the second floor terrace for Jackie’s snack. It was a beautiful night. The break was short lived as it was a shave and shower night.  We went back up to Jackie’s room and Nana gathered her things and I walked with her to the train station which just happened to be the same route to the drug store.  Jim and Jackie hung out in the room until I got back.  Then it was time for a shave and shower. Once in bed, Jackie and Jim watched some of the Flyers game.  Even with his glasses, Jackie does not enjoy watching long periods of TV.  Sometimes he will fall asleep just listening to the game vs watching it.

His night was not that restful.  His sleep was blended with muscle spasms and body jumps, the kind that most of us get when we sleep, except Jackie has way more.  A new day has arrived and I hope with all my heart that it is a good one.  Many of us have the choice to make our days good or bad, count your blessings, be kind and make your day a good one!

“Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence.”
~Helen Keller

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