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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Monday, October 13

Epic Vector

Jackie started the day with a visit from Dr. K.  We reviewed meds and possible side effects that Jackie may be experiencing.  We set a plan and will continue to keep a close eye on Jackie and how he feels throughout the day.

Becca was back and took Jackie to her office for Speech therapy.  They worked on tongue and swallowing exercises.  Then they snacked on some fun things like Cheez-Its.  Becca uses different types of snacks to get a gauge on Jackie’s swallowing function.  He is still only eating soft foods for pleasure at this point. They also continued their review of cell phone usage.

Back in the room and with about an hour to go before PT, we decided to open some cards.  Lately we have been able to read more cards to Jackie than usual at one sitting.  Jackie’s emotions seem to be more under control and the cards help give him a little boost.

Right on time, Erin was at the door and ready for her PT session with Jackie.  Today they did some stretching and then headed up to the Vector. During the session Erin always guides Jackie’s left leg forward and ensures it is in place to enable his right leg to be able to take a step on its own.  She always encourages Jackie to try to move his left leg but ultimately needs to assist him. Today one small step ended up being a huge leap forward as Jackie moved his left leg one time on his own.  PTL  When they came back to the room Erin told Jackie to give us an update on the session.  Using the loudest voice we have heard in a while he said, “I moved my left leg,” and his face lit up with a smile from ear to ear.  It was an epic vector session!

After much celebration with staffers we helped Jackie get in bed for his nap.  Between a couple interruptions and just being too restless, Jackie was unable to sleep.  The time in bed was still beneficial as it gives his body a break from his chair.

During his OT session with Paula they worked on stretching and engaging Jackie’s left hand.  There is more work to be done here as the muscles in his left arm continue to be very tight and pull his arm upward.  By the time the session was over his left hand and wrist were relaxed. Paula plans to use the robot more to help engage Jackie’s left arm.

While Jackie was at therapy Jim and I spoke with the mentor coordinator for our floor.  She arranged for us to meet with a young women who suffered a TBI in a car accident and had been a patient at Magee.  She was able to go back to college to finish her degree and now works and volunteers at Magee. We also met with her Mother.  After our conversation, we believe she can help Jackie as she has been through many of the same things he is going through.  Jim and I may plan to meet with her Mom one more time to gather any parenting advice she can share.

Jackie rested a little in his chair and then we all played Wii bowling.  We have nicknamed Jackie the ‘spare man’ since he is getting good at getting all the pins down with his second roll.

It was then time to get back in bed for his overnight nutrition and for his evening meds.  Today was a great day…epic! PTL

“The first step toward success is taken when you refuse to be a captive of the environment in which you first find yourself.”
~Mark Caine

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Sunday, October 12

Jovie And The Surprise

We all woke this morning anticipating the arrival of our family dog Jovie.  An 80+ pound Golden Retriever with an exuberant amount of love to share.  We haven’t seen her since before Jackie’s surgery in early September and could not wait to be reunited once again.  Jim went to the lobby to meet our very good friends who have become our consistent Jovie taxi, and was greeted with a huge furry hug.  Our friends said that she slept most of the way until they reached the city limits.  At that point Jovie was up, looking out the window and I truly believe could sense we were near.

Jim and our friends met Jackie and I sitting on the second floor terrace.  I received a similar greeting as Jim, but it was short-lived as Jovie spotted Jackie. She made a beeline to his chair, put her paws gently on his lamp and gave him kisses as the beautiful reunion began.  I know I have talked about this before, but there is a calming factor that a family pet brings to a household.  It is like an anchor of love that consistently grounds its members, day in and day out.  We are fortunate to be able to experience this feeling miles away from home when she visits. Jackie experiences even more. His facial expression tells it all as he completely focuses on her and somehow pushes the reality of his situation aside.  So many things have changed in his life, but the love of his dog is something that has never wavered, and something he can always count on no matter what he looks like or how he feels.

We all were catching up and enjoying the beautiful fall day.  Our friends had made a lunch date with their friends in the area and would return later in the day to take Jovie home.  We had promised Lindsay that we would share pictures from the day since she and Florent wouldn’t be here. We just got done talking about them when the automatic, sliding doors opened to the terrace and there they were.  They had surprised us with a visit and the tears and fur were flying.  The most special part of the surprise was that Lindsay had told Jackie that they were coming a couple days ago while they were on the phone together, and he didn’t spill the beans. When asked by Dr. K on Friday, if he was having any visitors over the weekend, Jackie simply replied, “Jovie.” The look on Jackie’s face was priceless when Lindsay and Florent walked in.  He had done something on his own, which is rare these days, he had pulled off the surprise. PTL

The afternoon hours went quickly.  It was one of those times you wish you could pause and keep replaying over and over again.  To have our family unit together was so incredibly special.  We cannot wait to get home so these moments can last even longer.  We laughed, we hugged, we cried and got caught up with each other’s lives.  It is always hard to say goodbye, but we are hopefully getting closer to going home and that makes things a little bit easier to handle.

The rest of the day included the usual wheelchair pull down the hall on the second floor and the rests in bed with Jovie by Jackie’s side. I’m hoping these tastes of home continually encourage Jackie to keep staying strong and to realize that it will only be a matter of time until we get there once again.

Around the same time our friends came back to take Jovie home, Jackie’s spasms started to kick in and he was getting tired.  We went back to the room for a quick snack and then Jackie showered and headed to bed.  He had a fairly restful nights sleep, one I hope was filled with dreams of home and a future that is still full of the same goals, just with an extended timeline.

We are blessed with support from so many family members and very good friends.  I just wanted to send a special thanks out to MA.  Our dear friend who has temporarily adopted Jovie.  She has cared for Jovie as if she were her own, and her family and their friends have created an incredibly loving home away from home for her.  We are touched every day by her kindness and hope she knows how much it means to us.

“Don’t wait for extraordinary opportunities. Seize common occasions and make them great.”
~Orrison Swett Marden

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Saturday, October 11

Game Day

The only therapy scheduled for Jackie this weekend was Recreational Therapy and for some reason Jenna was not able to work today.  We decided to have our own session and hooked up our Wii system to the large screen TV in the gym.  Before long we were in the middle of a three game bowling series.  It was Jackie against me.  It is common knowledge that our family is highly competitive.  It has never been a negative thing, just something that makes even the smallest game that more interesting.  Needless to say Jackie and I were in a heated battle for bowling bragging rights.  I had asked Jackie when we had played once before if he wanted me to purposefully let him win and he said no.  In fact, if you have even a little bit of a competitive nature, having someone throw a game so you can win is way worse than losing.  Needless to say we had a great time and Jackie was getting much better at using the paddle and releasing the B button on cue with each game. PTL Even though Jackie was getting uncomfortable in his chair, you could tell he didn’t want to stop.  Ultimately pain prevailed and we went back to the room for a break and some banana whip.

While snacking we turned on TV and caught two wildlife shows, one hosted by Jeff Corwin.  We used to watch his nature shows all the time when the kids were younger and Jackie seemed interested.  I’m not sure if it was because of his love for animals or if he remembered Jeff from earlier memories.  Either way it was helping keep Jackie’s mind off of his pain and the uncomfortableness he felt in his chair.

We helped Jackie get in bed for his nap and I headed over to the hotel to shower. When I returned the boys were up.  They both had taken a little nap. After a bit of laziness and lounging in bed we had to persuade Jackie to get up.  After all it was a rainy day and being in bed just seemed like the right place to be.

Once up, we decided to head to the gym again.  I put in some laundry and Jackie and Jim played more Wii.  Bowling was first and then golf.  After several games Jackie’s tolerance was starting to get low so we went back to the room.  Jackie ate a Magnum bar and was still hungry for more.  We ordered some take out and included a side of mashed potatoes and gravy.  Even though we ordered from an Italian restaurant the potatoes were excellent.  We all enjoyed eating and watching some college football.  Jackie was starting to become restless and it seemed as though some spasms were returning to his right hand.  We ended up feeding him the second half of his meal.

After letting his food settle, we helped him get into bed. He had been sweating more than normal in his chair and continued to seem flushed.  Alter about an hour of restlessness we had to change his shirt and pillow cases as they were wet. The dosage of one of his new meds was increased, and we believe this must be the culprit for these new symptoms. It took until midnight for him to truly settle down, but he finally had good periods of rest.

We thank all of you for following Jackie’s marathon to recovery and for keeping him in your positive thoughts and prayers.  Each day and night can include incredible feelings of joy or periods of frustration and sadness.  We like to focus on the joy and hope that each day will be filled with more happiness than the day before.

Don’t give up. Don’t lose hope. Don’t sell out.
~Christopher Reeve

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