This morning I found the boys snoozing when I came in the room.  Jackie usually gets a vital check around 6am that wakes him up.  When he falls back asleep after this check it is hard to get him up.  Even though we were moving slow,Jackie managed to eat breakfast,talk with Dr. K and take morning meds prior to his speech session.   Becca and Jackie reviewed the date and also worked on talking with  a louder voice.  Jackie also searched online for video clips he wanted to watch during speech session breaks.

We kept Jackie up and went to PT.  Erin and Jackie worked on transfers and laying down and sitting up.  Once again Jackie ‘s chair was changed to ensure the proper positioning.  A new backrest was put on which provides a little more back support.  He also received a new armrest for his left arm.  This is larger than the one he had before and should help keep his left arm straight.  As soon as PT was over it was lunchtime. Jackie ate a lighter lunch than usual and went to bed for a short nap.  This afternoon he had another session of PT vs OT. He stood at the parallel bars.  Worked on transfers from his chair to the bar and also practiced basic stepping moves.

He had just enough time for a quick nap before dinner.  His eating pattern seemed to be getting somewhat back to normal.  Since it was still early we spent some time on the outside terraces. Jim and I noticed that something didn’t seem right with Jackie.  We decided to call it a night and headed back to his room.  A little bit after we got him in bed he started to get pain on his left side.  He ended up getting sick a couple times.  His vitals were ok so we stuck it out.  We need to work with the docs to find out what has caused him to get sick within the last two days.

He improved throughout the night but woke up sick again.  Will give another update tomorrow. Thank you for your positive thoughts and prayers.

Back on Track

Jim and I both stayed in the room last night and took shifts keeping an eye on Jackie.  It brought back memories of our many months of long sleepless nights in the hospital.  Fortunately Jackie had a decent nights sleep and woke up feeling better.  We were off and running again.  PTL

We limited Jackie’s breakfast foods this morning just to be sure.  He had his morning meds and we spoke with Dr. K.  The results of the overnight blood work looked good.  PTL!  We stopped the new med that may have been causing the problem and will take things one day at a time.  We were back on track!  Becca came to get Jackie at 9am for speech.  They worked on memory skills and shape puzzles.  To break up the session, Becca interspersed YouTube scene clips from some of Jackie’s favorite movies.

Jackie was only able to take a small nap and was up and heading to the gym before we knew it.  The first half of PT was spent working on transfers and the art of laying down and sitting back up.  Erin teamed up with Kristen, Rec therapy, for the second half of the session and worked on sitting balance while playing with the conversation ball.  One time Jackie caught the ball on the topic of describing family members.  Jackie said that his Dad likes to have fun, Lindsay likes computers, Jovie is laid back and Mom is nervous.  Ouch – ok I guess I am allowed to be nervous after all it has been quite a crazy ride these last couple months.  Jim and I did not attend this session which was good for Jackie and his feelings of independence.

Jackie was back in his room right around lunch time.  He mentioned his stomach was not feeling right so we limited lunch as well.  Once again, by the time we got him in bed, he had just enough time to take a short nap.  We had to wake him up for OT.  Paula stretched Jackie’s left arm as it has been having some spasms lately.  They worked on Jackie’s sitting and standing balance and posture.  Looking in the mirror was extremely helpful.  I mentioned in an earlier post, the goal for Jackie is to get him in a wheelchair that he can move himself. It will be a challenge since his left side is so weak, all the more reason for strong trunk control.  We also need to wean him off the headrest on his chair.  I am not sure that goal will be met before we leave Magee.

We are going to work with the therapists to create a daily schedule that includes a rest break.  The schedule will help Jackie mentally prepare and work through each day.  Eventually the rest break will need to stop so Jackie is prepared for the next step in rehab.  We still have a bunch of weeks left to go at Magee, but are researching day rehabs as the next step.  Jackie will go to the location for the day but will not stay there overnight.  After that will be out patient therapy and then additional therapies as we see the need.  TBI recovery is a long process.

Right after OT we headed down to the lobby.  Waiting there, wagging her tail was Visa, one of the therapy dogs we saw at Jefferson hospital.  Jackie was thrilled to see her.  All the times he saw her at Jefferson he was not able to pet her due to his infections. You may remember the posts where I said we wheeled Jackie’s hospital bed to the door of his room so he could see her.  Jackie had the biggest smile on his face when he pet her for the first time tonight.  He leaned down a little too far and after a while got a headache.  We ended the visit and got Jackie in bed for a rest before dinner.  Visa is planning to come back and see us again.

After a short nap, we woke Jackie up for dinner.  After meds we went up to the sixth floor terrace, had a snack and played Black Jack. Then it was time for a shower, bed and evening meds.  One of our  favorite nighttime nursing assistants was not working tonight so Jackie and I picked Jim as our assistant.  Let’s just say instead of the usual calming relaxing experience, Jackie was laughing the entire time.  It was fun.  Now Jackie is very tired and started watching the NBA draft with Jim.  Although I think he may have only seen a couple minutes before falling asleep.

Even here at Magee it is easy to take things for granted.  Yesterday Jackie got sick quickly and it reminded us of how blessed we are that his health has been stable.  It is always good to be thankful especially for just routine days of wellness.

Half n Half

The boys were awake and moving when I got to the room this morning.  Jackie was getting back to a normal therapy schedule today.  He ate breakfast and spoke with Dr. K all before 9am.  Becca just started having her speech therapy sessions in her office vs Jackie’s room, so she picked him up for their first half hour of the day together and headed down the hall.

After speech Jackie got back in bed and rested for about 15 minutes until Lori came in for art therapy.  He worked from the bed and completed a pencil sketch.  Jackie participates in group art therapy Monday nights and then has a 1:1 session during the week.  After Lori left he took another 15 minute cat nap and then it was time for the Vector.

Jackie worked with Erin and another therapist on the Vector for the entire hour. He had a great session.  Erin felt he was moving his left leg a little better today.  PTL  He came back to the room and was ready for lunch.  Jim had to run an errand and returned with Starbucks.

Jackie had a good appetite and right before Becca came to pick him up for his second half hour session after lunch he said he had a headache.  He was sweating and seemed very tired.  Instead of speech, Jack took a nap.  Paula came in to check on him and he woke up and went to the gym.  She made a splint for his left arm. When the muscles in his upper arm move, the lower arm tends to tense up and sometimes close into a tight fist.  The splint should help stop that from happening.  He will need to wear it on and off throughout the day or night.  It is a custom splint that Paula molds herself to fit Jackie’s forearm,  wrist and hand perfectly.

When he got back to the room it was only a couple minutes until dinner.  Jackie was tired but we all decided it was best to just eat dinner now.  After finishing he mentioned that the headache that had lessened in severity from earlier in the day, was now getting worse again.  Within a couple minutes he got sick.  He seems to be settling down now and we plan to watch him closely overnight. The start of a new med could be the cause of his pain and sickness.  We have stopped it for now.

Jackie had a great first half of the day and a not so good second half of the day.  The course to recovery will not always be smooth.  We just need to continue to focus on the positives and a cup half full.

Thanks for your continued love and support.

A Visit from the Fridge

Jim walked into the room this morning to find Jackie and I still snoozing.  We had been up just an hour and a half earlier and were being lazy.  Jackie had speech at 9 so we had to get up and at ’em.  While Jackie was eating breakfast he had a visit from the Director of Dietary for the hospital.  We talked about the importance of the right high calorie diet including protein for TBI recovery.  I had found a picture of Jackie from one of the first days we were at Magee.  The image showed a frail, extremely thin Jackie with a trach, pic line and stomach peg tube.  We still have a long way to go but it was amazing to see how far we have come since February.  PTL!

Jackie’s therapy schedules were updated slightly for today.  Speech was broken into two sessions this morning with Becca.  They played memory and brain games, watched YouTube clips and worked on paying attention to Jackie’s left side. Jackie was able to catch two very small cat naps in between sessions.  He had a busy afternoon schedule so it was important to eat  lunch on time.

First up for the afternoon was Erin, PT.  She took Jackie to the fifth floor gym for a workout on the leg press machine.  They ended the session back in our fourth floor gym practicing walking with the parallel bars. When Erin brought Jackie back to the room, a special visitor was waiting for him.

Todd Fedoruk, a Flyer Alumni nicknamed The Fridge, stopped in to see him.  Todd visited with Linda, a Sr Director with the Flyers organization.  She had been in contact with Jim to make a visit from someone in the Flyers family happen. A fraternity brother of Jim’s helped connect him and Linda. Jackie enjoyed talking with Todd about the days he played in the NHL.  The Fridge told Jackie to be positive, keep working hard and stay strong. After the visit in Jackie’s room we all went to the gym so Todd could see where Jackie works out everyday.  The visit was inspirational and meant alot to Jackie.  Thanks to Todd, Linda and the Flyers organization for making Jackie’s day!  Jackie also loved everything in the goody bag including a signed Wayne Simmonds jersey which is now proudly displayed on the IV pole attached to Jackie’s bed.

Nessie, the Sheltie therapy dog that Jackie met at Magee one time before, stopped in while Todd and Linda were here.  Jackie was able to pet her while he was talking with Todd.  Hopefully Jackie will be able to see her again.

Todd was in the gym for the start of Jackie’s OT session.  He worked on his sitting balance and Paula helped him stand to get a picture with Todd.  He finished out the session using cards to work on perception.

Jackie came back to his room and took a nap before dinner.  After he ate and had evening meds we went up to the sixth floor terrace for a snack.  After we returned it was time for a shave, shower and bed.

Jackie was exhausted from a full day of workouts and visitors.  We are always thankful for each day and look forward to the possibilities each new day will bring. PTL

Good News

Today Jackie was out of his routine.  He had a morning CAT scan and follow up appointment with his neurosurgeon.  He was up early and ready for breakfast when the trays arrived.  After morning meds and a short wait, the transport van was here to take us to his appointments.  Our last transport for a doc visit before this was not a positive experience.  From a fast, bumpy initial ride to waiting hours for pick up, things could only get better this time.  Our first driver this morning had been on the job for years and was wonderful.  Coming home was bumpier, but overall a much better experience.

The CAT scan was nothing new for Jackie so he got through it without any problems.  We transported Jackie in his wheelchair so Jim had to transfer him from the chair to the CT table.  We were in and out in no time.  Since we were early for the doc appointment, I asked if there was any way we could get in to see the doc early, and we did.  We we’re back at Magee in time for a late lunch.

The results of the CAT scan looked good!  Jackie’s office exam also went well.  PTL! We are now scheduled for another CAT scan at the end of August and plans are for surgery sometime in September.  The timing is what it needs to be so in the meantime we will continue to work hard getting the left side to start moving more.  The doc, Jim and I believe that the left side will become stronger post surgery.  Patience.

Since Jackie did not have any scheduled PT sessions, Jim stretched out his muscles and then he settled in for a needed nap.  We hung out on the 6th floor terrace prior to dinner.  It was beautiful out. We sat in the shade and had some impromptu conversations with some staffers.  Next up was dinner, desert on the terrace and then art therapy.  Jackie made a sign for his room door.  The boys were laughing as they vetoed all of what I thought were clever ideas.

The sign is now on the door, evening meds are done and Jackie is sleeping.  He seemed to lighten up after we returned from the appointment.  I am still not sure how much of this entire journey he has internalized.   I do know we are being truthful with him and will help him get through each new day.

Thank you for following Jackie on his marathon.  I hope his journey helps you appreciate each new day and all the simple but truly amazing things in your lives.

Small, good things make big, good things happen.

The statement above is one of the things Jackie remembered and recalled quickly. This was something his high school basketball coach told the members of the team all the time.  It is similar to taking baby steps but takes it one step further.  Pat and Jen, friends of Jim and mine before the kids were even born, visited us yesterday and were so proud of Jackie and the progress he has made.  Coach and Jackie were talking and reminisced about how applicable that statement is even now.   Jackie has been working hard and making good progress each day.  This progress, though small, is building into big results.

Today was an unusually busy day.  Because of a follow up doctor appointment on Monday, Jackie will be missing therapy sessions.  The make up sessions were held today to keep him on course. He started the day with OT.  Paula worked with him on getting dressed.  She also helped hold him in a standing position at the sink so he could brush his teeth.  An incredible sight to see.  PTL

Since Jackie’s breakfast was cold at this point, we took him down to the cafeteria, had them warm up his plate and picked up some breakfast for ourselves. It was fairly quiet since we were there near closing time and we ate our breakfasts together.  The experience was Jackie’s second for the cafe and was another good one.

We came back upstairs for morning meds and then it was time for PT.  Jackie spent time with a therapist who we had never met before.  She was very nice and worked with Jackie on transfers and standing. She then teamed up with Jenna our recreational therapist and they worked with Jackie to play Wii golf in both a standing and sitting position. He had a great time.

As we were leaving the gym, a speech therapist who was new to Jackie came to pick us up and worked with him for the next hour. She received her masters from Bloomsburg so there was a nice connection to get things started. They worked on word search games and played scategories.  All exercises that are good for the memory.

We decided to see how Jackie would do eating lunch in the cafe.  I wouldn’t say it was a huge success, but was ok.  There were many distractions so we finished lunch in his room.  Jackie was absolutely exhausted but before we moved him in bed for his nap he was weighed.  He gained weight once again and is now 135 pounds!  PTL

Jackie took a very long nap.  I think between his long day yesterday and his therapy sessions today he was extremely tired.  We woke him up for dinner and he was still sleepy.  He did not eat near as much as normal.  At 5:15 he said he was ready for bed.  With a quick trip to the second floor terrace, a shower and some US soccer action, we were able to hold him off until 8pm.

It was a day of small, good things.  Thanks Coach for reminding Jackie of a high school reference that has turned out to be a life lesson.

Longest Day of the Year

It was tough getting Jackie up today, after all it was Saturday and Jackie is 19.  The normal routines kicked in including getting dressed, eating breakfast, and taking meds.  Jackie’s only therapy today was rec therapy.  He looks forward to these sessions because they usually involve playing a game.  Today Jenna took us to the fifth floor to a little gaming room.  Jackie played a Wii target shooting game.  He really enjoyed playing and got better with each round.  Jenna had him use as many body movements as possible and continuously quizzed him on his scores and how he was doing based on the previous game.  Jackie’s short term memory is still not strong, but with small coaching clues he is able to recite the correct information.

After rec therapy Jackie’s day was full of visitors.  We are trying to schedule and spread out the visits as he gets tired easily.  Today was special because Lindsay and Florent came down for the day.  They brought two of Jackie’s best friends with them which made the visit even sweeter.  Additional visitors rounded out the morning and early evening hours.  By the end of the day Jackie was exhausted, but happy.

We continue to hear of ways our friends and family are showing support for Jackie and cannot tell you how very blessed we feel.  Please know that you have touched us in ways you will never know.

Today was the first day of summer and the longest day of the year.   It was still winter when Jackie’s marathon began, the longest day of our year and our lives.  Hopefully your longest day of the year was today, celebrating summer and having fun with family and friends.

Musical Memory

Today was a good day.  Besides a little bit of a change in the nursing staff, everything fell into its normal routine, which is good.  Jackie woke to blueberry stuffed pancakes and scrambled eggs and cheese.  He enjoyed his breakfast, made it through his morning meds and was ready for speech.  The weather was beautiful so Becca and Jackie went to the sixth floor turned on some tunes and played Black Jack.

Not long after their return, Paula came to get Jackie to take him to the gym for a follow up eye check.  After the exam it was determined that the prism that is affixed to the left side of his glasses is working as it should.  The brain is occasionally starting to recognize the left eye and not ignore it.  We are hoping the prism is temporary and will not be needed after Jackie’s next surgery.

We got Jackie back in bed for a very quick cat nap.  We had to wake him when it was time for PT.  Erin came into the room like clockwork to pick him up and take him to the gym.  They worked on sitting and standing for minutes not seconds.  PTL. Erin coached him through every step of the way to help him make necessary adjustments so he wouldn’t fall over.  When he stands he uses a large cylindrical bolster that is basically made out of the same material as the gym mats.  It is tall and allows Jackie to rest his hand on it for support.  Erin stretched out Jackie’s muscles and then with another therapists help assisted Jackie with walking. One moving the left leg and the other keeping his trunk in place.  Before heading back to the room, Erin put a new cushion on Jackie’s wheelchair seat.  Time will tell if the new cushion is comfortable enough to keep.

Lunch was next, then the second half of speech.  Jackie was able to be in bed for this session.  Becca and Jackie listened to music,  played Words with Friends and memory games.  After the session ended he had a short amount of time to rest prior to OT.

Paula came to the room and picked up Jackie.  This session included arm stretching and sitting exercises with a balloon.  He also used the conversation ball.  He had used something similar in rec therapy.  This is where you catch a ball similar to a beach ball and then read the conversation starter sentence that is closest to where the ball is caught.  Nana was here and was able to watch.  Since she never saw Jackie walk Paula and Erin put on some music and together they helped Jackie walk in the gym.

After dinner and a shower Jackie was ready for bed.  Now that Jackie is able to withstand a little more stimulation we have been incorporating music as much as we can in therapy sessions and back in his room.  It is wonderful to see his face light up when he remembers the lyrics to a song or can name the artist.  It is fun and relaxing for Jackie and boosts the healing process for his brain, helping it slowly put the pieces of memory back together. PTL

Crank up the music today and recall some fun memories, you may just create new ones in the process.

That Smile

Jackie had a fairly restful night and woke up without a headache.  PTL!  He had a healthy appetite for breakfast and was ready for speech  at 9:30.  Becca played the board game Guess Who with him.  She was surprised none of us had ever played the game.  It requires a lot of cognitive skills so there are many benefits to playing.  She also worked on general memory skills and brought some sports related jokes that Jackie read and kept to share with others.

Jackie’s PT and OT sessions went back to hour long segments today.  This allowed Jackie to get a needed cat nap.  The majority of his PT hour was spent on the third floor using the Vector technology.  Jackie is getting used to this computer assisted walking device and was ready to work hard.  Jackie wears a harness which lifts him up to a standing position and moves along a track in the ceiling.  Today, Erin reduced the settings so only  10 pounds of Jackie’s weight was being lifted while he walked.  Erin coached him every step of the way and also guided his left foot.  Another therapist, helped hold Jackie’s body in the correct position.  Jackie did several walks with breaks in between.  His last walk was aided  by both therapists without the Vector machine.  We saw glimpses today of his left leg moving more than it has before, small but significant movements.  PTL!

Lunch immediately followed PT.  The second half of speech was after that. Becca continued the work from the first session into the second session. After a small rest break it was time for OT. The highlight was the use of the Wii gaming system.  Jackie played baseball and bowling.  Paula supported him in a standing position so the movement of his arms seemed more natural.  Next it was time for dancing to songs, the last one was YMCA.  Another older patient moved to the music along side of Jackie.  The intergenerational experience was good for both of them.

As you know from reading the blog posts Jackie struggles with movement on his left side.  This limited movement goes from his head down to his toes. He consistently says he tells his brain to move the left side, but in most cases it doesn’t listen. On several occasions today we noticed that his infectious smile was turned up not just on the right side but on both sides of his face!  PTL.  That beautiful smile is hope and a reminder that time is indeed what Jackie and his body needs to heal.

Thank you for your positive thoughts and prayers.

Canine Comfort

Jackie woke up and started his day following the usual routines.  His transfers out of bed to the wheelchair have been going well thanks to the practice he has been receiving in therapy sessions.  He had a good appetite for breakfast but seemed tired and a little down.

Today we were going to try a new therapy schedule. The hour long therapy sessions were all split in half and would be given in half hour increments.  The hope was that the new schedule would help Jackie be more focused and alert and less tired.  The schedule would ultimately help increase his stamina as well.

Speech was first.  Becca worked on Jackie’s memory, had him name items in categories and also gave him a sentence scramble test. After a half hour break he went to OT and worked on transfers and stretching. Another half hour passed and he moved on to PT. By this point, Jackie did not have the morning cat nap that he was accustomed to and fell asleep in his chair in the gym while waiting to get into the standing chair.  He woke up and was able to complete the session.

We went back to his room and decided to let him sleep.  This pushed back lunch but he was really too tired to eat.  We had to wake him up since it was best to have something in his stomach prior to his mid-day meds.  Before long it was time for his second speech session.  This seemed to be just what Jackie needed.  Becca had scheduled a special 1:1 session with Joey, Magee’s therapy dog.  Jackie had spent some time with Joey a couple weeks ago and loved it.

Jackie was able to get back in bed for the session and Joey jumped up and laid with Jackie.  While he was petting her and enjoying her closeness he was quizzed on information he had just learned about Joey and her background.  He did well answering the questions.  Next it was time for Joey to work.  Her owner showed Jackie how she could open and close cabinet doors.  Jackie then gave her the commands from bed and watched with delight as Joey followed them opening and closing his wardrobe door.  Then Jackie played tug of war with Joey using a brand new toy that he worked to remove the tag from. After a game of catch it was time for the session to end.  He gave Joey a treat and said goodbye.  It was great to see him smile and laugh again.

He rested until his next session.  We wheeled him into the gym for OT and he started to look tired again.  Paula took over and Jim and I headed over to our case managers office for a weekly update meeting. Jackie rested in his chair prior to his final session of the day.

During PT, Erin helped Jackie walk using the parallel bars.  This was his second time using the bars and he seemed more secure.  Erin’s assistance and coaching helped Jackie have a successful session.

When we got back to the room we got him in bed to rest prior to dinner.  He never really slept so we got him up so he could eat.  After he was done with his meal and meds he started to get a headache which ultimately worsened.  We had the doc on call check him out and his vitals and neuro exam were fine.  PTL

After a dose of Tylenol he fell asleep.  We have been told that TBI recovery includes good and bad days, fortunately Jackie has been experiencing mostly good.

You know the saying, Every day is a gift – that is why they call it the present.  We understand that more and more each day.  Make your day a great one!