A Good Day

This morning there was no rush to get ready.  We got Jackie up, he had breakfast and morning meds. Like yesterday, the only therapy he had scheduled for today was rec therapy.  After breakfast, we headed up to the sixth floor for a little sunshine.  Jackie fell asleep in his chair.  We came back down to the room and he fell asleep again waiting for Jenna.

With a milk crate full of plastic bowling pins and a hard plastic bowling ball in her hands, Jenna came into the room ready to go.  We all headed up to the sixth floor terrace for bowling bingo.  Jackie seemed down again this morning so we were hoping this new activity would help him smile.  Jim was the bowling pin guy and Jackie and I bowled.  Whatever number of pins you knocked down, that is the number you marked off on your bingo card.  The half hour was flying by as normal and Jackie needed an 8 to win.  He ended up with his first strike which was a great way to end the session.  He seemed to perk up a little bit but was tired.  We went back down to his room and he took a nap before lunch.

Jackie slept a little past lunch but he seemed well rested.  After eating it was time to weigh-in.  He is back to a positive weight gain and is now at 131 lbs. PTL!

Jackie was expecting some visitors today.  One of his buddies from High School was coming with his family and he was looking forward to the visit.  We headed down to the second floor terrace to wait for them.  As a surprise, another one of Jackie’s buddies came along.  It was just what the doctor ordered.  Jackie’s face lit up when he saw his friends.  After a short visit with all of us on the sixth floor terrace we came back down to Jackie’s room. The women cleared out and let the guys talk.  After a while Jackie was getting tired.  We all said our goodbyes and Jackie took another nap before dinner.

We fell into the normal routine of taking a trip to the second floor terrace after dinner and then headed back to the room.  Tonight was a shave and shower night.  Jackie was awake through nighttime meds and then fell asleep.

It was a good day.  One that included friends and laughter.  PTL

The Weekend

I remember how crazy weekends used to be prior to Jackie’s injury.  Jim and I always prepared a giant list of to-dos that could never get completely done.  All those things that we didn’t accomplish during the week days also were added to the list.  The list did not include down time.  After being in a hospital setting for so long you realize that half of the items on that list may not have been necessary.  Being here puts things in laser vision perspective.  Our lives have changed and the focus now and everyday is on the truly important stuff.

We let Jackie sleep in a little this morning.  He only had rec therapy on his schedule for 10:30.  We decided to take his tray down to the cafe and eat there.  It is nice to give Jackie a change in scenery and weekends are usually more quiet. We came back up for morning meds.  We had about 15 minutes before Rec therapy  which was just enough time to go to the sixth floor terrace for a little bit of fresh air. We came back down and then went up to the fifth floor to the gaming room.  Jackie tried the racing game.  Jenna pushed Jackie’s wheelchair up to the machine and lowered the handles so he could reach them.  Jackie basically did with his hands what your feet do on a bike.  He pushed the handles in a circular motion for speed and moved them right, left or up or down for the direction of the race car.  Jenna worked the left handle, Jackie the right.  It was hard to do, but it was different and Jackie seemed to like it.  The half hour went quickly and we came back to the room for a nap before lunch.

After he ate we visited with Nana and John for a while.  It was hot in the sun but beautiful under the canvas canopy on the sixth floor terrace.  Jackie was getting tired again so we headed down to his room and showed Nana and John the Talking Tom 2 app.  Once again we were all laughing hysterically at some of the features.  Most importantly, Jackie spoke loud enough a couple times for the app to recognize his voice.  PTL

Tuckered out, we got Jackie in bed for an afternoon nap.  He woke up around the same time the dinner trays arrived.  After his meal we decided to have his protein snack on the second floor terrace.  Even though he only had one therapy session he seemed really tired.  We decided to go back to the room and start watching a movie.  Jackie fell asleep a few minutes before it was time for evening meds.  I am hoping between Jim and I, the docs and the therapists, we can help Jackie feel less tired and happier. Without a doubt he misses being home.  He has now been sleeping in a hospital bed for 132 consecutive days.

As we now know very well, weekends in the hospital do not include giant lists, they are all about giving Jackie a break from a busy week of therapy and just enjoying each others company. Something we will be sure to continue when we get home!

Independence

On July 4th I thought about the word independence and how the meaning is so much more personal this year.  The actual meaning of the word as sourced on Dictionary.com is – Freedom from the control, influence, support, aid, or the like, of others.  When I read that I realized how much I take my independence for granted and how Jackie’s independence was so senselessly taken away from him.  Life has a way of taking us down those paths that we never thought we would travel. What has helped to pave the way is the support we have received from all of you, and that very word in the definition is one that will actually help Jackie make it.

Jackie slept in a little this morning since his therapy schedule was rearranged due to the holiday.  Paula, OT, came by at 8am to work on ADLs  or activities of daily living.  She worked with Jackie on everything from sitting up in bed to getting dressed.  She makes Jackie do as much as he possibly can.  When she asked him if he was glad she came in this morning he said no.  She actually wants to hear truthful answers. When she asked him why not, he said because it is work.  We explained that even though it is hard, it will eventually make him strong and independent.

After Paula finished her session we decided to take Jackie down to the cafe for breakfast.  Chef Ken made him fresh pancakes and came out to say hi.  We then went up to the room for a late round of morning meds and then it was time for speech.  Becca was off so we had a different therapist working with Jackie.  Based on both of our schedules he had a half session with her.  She took him to her office and they used two different apps to help with Jackie’s speech.  The one app is free and called Talking Tom 2. It is meant to help someone talk louder.  A tomcat listens to hear the voice and then will repeat what you say.  Jim and I downloaded the app as soon as she told us about it and all three of us had a blast playing with it.  The cat purrs when you pet it and has some other fun features with a dog.  Of course we worked with Jackie, but the majority of the time we were just playing around.  All of us were laughing so hard we were crying.  It felt awesome!  PTL

At this point Jackie was exhausted but we decided to push through and have him eat his lunch first then take a cat nap.  That ended up working out and by 2pm we woke him up for PT.  Erin was also off today so we had one of the other therapists cover.  She had a very positive demeanor and Jackie worked hard during her session.  They did stretching exercises, they practiced standing, and they also worked on sitting balance while hitting  a balloon back and forth.   When the session was over, Paula took over for another 30 minutes.  This made up for the time that Jackie missed during speech.

Paula focused on stretching the left side, standing and sitting.  She also helped me practice transfers with Jackie so I can also be approved to do them like Jim.  Jackie was exhausted again.  We headed back to his room and got him in bed for a nap.  He woke up more refreshed for dinner.  He ate well and then we all decided to get some fresh air on the second floor terrace.  We sat near the rail and watched many people passing by heading just a few blocks away to the free concert in center city.  There will be many noises outside Jackie’s window tonight celebrating the holiday.

We all know the true meaning of Independence Day, but Jackie is still waiting to celebrate his personal day of independence.  Like his forefathers, battles will need to be fought and won.  Strength, perseverance, patience and faith will pave Jackie’s way to victory; and you can count on a huge celebration when he gets there!  PTL

The Second Tour

This morning Jackie woke up and he seemed to feel better.   Dr K stopped in to check on him before breakfast.  Jackie had a decent appetite and took his morning meds earlier than usual.  By 9am he was ready for speech.  Becca had a speech student shadowing her today. They took Jackie up to the 6th floor and worked on asking and answering questions.  They also took Jackie’s Bluetooth speaker with them and played some tunes.  It was getting too humid so they returned to the fourth floor to finish the session.  Becca continues to work with Jackie to increase the volume of his voice and his pronunciation.  There have been a few times when we heard clear and articulate sounds so we know it is just a matter of practice and repetition so his words sound that way consistently.

Nana and John arrived and were here to be with Jackie while Jim and I toured Magee’s day rehab program.  We were able to catch a shuttle from the hospital to the day rehab location which was about a 15 minute ride.  The program is similar to the one in Hershey with just a couple minor differences.  It is now a matter of listing the pros and cons and making a decision.  Once we have decided, Trisha our case manager will help with all the details in reference to timing, insurance coverage and all the additional things that need to get done.  I sometimes cannot even remember what day it is, so her help is invaluable.

While we were away, Jackie met with the staff Psychologist and also had PT.  Erin took Jackie to the third floor for walking practice using the Vector.  Jim and I were back just as his session was wrapping up.  We went down to his room and he ate lunch.  Paula moved up his OT time slightly, so Jackie visited with Nana and John vs going to bed.  He actually fell asleep in his chair for a half hour before OT.  Paula worked with Jackie on some stretching and trunk control.  She also did two electronic stimulation treatments on his left shoulder.  Erin helped out by putting another back on his chair.  When we picked him up in the gym he didn’t seem like himself.  His vitals looked ok so we thought once again he may just be over tired.  He took a nap from 3.15 until 5pm.  He woke up and was still tired.  He just didn’t feel like communicating.  Once he was in his chair he was upset and we talked through some tough topics.  Dr. K is working this weekend so will keep an eye on him.

Jackie ultimately ate a healthy dinner and then enjoyed some visits from friends that lived on the same floor as him in the dorm.  This group of students had a strong bond and considered themselves to be family to each other.  Even though Jackie did not contribute much to the conversation, it was great for him to see his friends.

Jackie was very tired.  He took his evening meds and went to sleep. As we continue to learn and see first hand, TBI is tough.  It not only includes daunting physical challenges but also neurological challenges.  We continue to reassure Jackie that he will get better with time and we all need to be strong and patient.  The patience piece is hard enough for Jim and I but when you are 19 and it is your body and mind that is not working as it used to, it is almost impossible to be patient and positive.  Each day brings hope for small break throughs and baby steps toward the finish line.

Enjoy your Fourth of July, your time with family and friends and be safe.

Too Busy

Jackie’s day started out as usual.  He ate a good breakfast, had his meds and headed off to speech.  Becca is still working hard to get Jackie to speak louder and have better pronunciation.  She taped Jackie today so he could hear himself.  He didn’t like what he heard, but is still speaking in the same way.  As with everything related to TBI, it will just take time.

Right after speech Fritz, the head of concierge services came to Jackie’s room and gave him the buzz cut he has been wanting for a while.  Fritz has been at Magee for years and started as a CNA.  He has helped us in far too many ways to mention.  I cannot say enough about the staff here.  In fact, we have been blessed with wonderful, caring staffers at every stop along this marathon.  Thanks to all of you who have cared for Jackie.

Lori, the art therapist, pushed her appointment time with Jackie back half an hour to allow for the haircut.  There was jut enough time for the session with her before PT.  Jim and I left the room so Jackie would feel free to express himself without us around.  The time with Lori is not only therapeutic for Jackie but also helps provide valuable feedback to Jackies team.  Today the manner in which he drew the lines on his paper, helped confirm some problems with his vision and perception.  At the end of the session Dr.K stopped in.  We had missed him during morning rounds.  While he was speaking with Lori and Jackie about his artwork, Erin came in to take him to the gym.  She put her hands on his shoulders, said hi and Jackie said, “Hi Erin.” All of us were impressed that Jackie knew who it was without even looking.  It was not too long ago that Jackie could not remember any of their names.  PTL

During PT Erin teamed up with Kristen from Rec therapy and they played life size Jenga with Jackie.  This was a great exercise for Jackie’s standing balance.  Erin also worked on Jackie’s wheelchair and put on a different back. This may seem like a lot of changes, but the team constantly assesses Jackies progress and adjusts the fit of the chair accordingly.

Next up was lunch.  Jackie ate well and when he was almost finished Evelyn, the Director of Nutrition stopped in to check on him.  I realized I did not give a weight update on Sunday.  Jackie lost a little over 5 lbs.  It seems like a lot but being sick and not eating much was a big factor in the loss.  She is keeping an eye on him to make sure the pattern does not continue.  After her visit we got Jackie back in bed for a very short nap.  Before long he was up for his OT session.  Paula retested Jackie with the Dynavision machine. This is the machine where a computer program lights buttons on different areas of the screen.  Jackie needs to press the button to turn off the light.  It helps test his vision.  She also used the machine that robotically moved Jackies left arm for him.  This is to help the brain strengthen its connections with the movements of the arm. Paula also put a new left arm rest on Jackie’s wheelchair.

It was now 3:45 and since it was so close to dinner we decided to keep Jackie up to visit with Grandma, Grandpa and Cousin Ashlie.  We went up to the greenhouse on the sixth floor to give Horticultural therapy a try.  Jackie selected and then planted a Purple Heart plant for his room.  He will need to remember to water it every other day.  Since he has little functionality in his left hand, the therapist showed him ways to get the tasks done with one hand.

The dinner trays arrived shortly after we were back in Jackie’s room.  Near the end of the meal Jackie got flushed and was not feeling well.  He got a quick shower and by 6:30 he was in bed.  We had to wake him an hour and a half later for meds and he seemed much better.  We think he was just exhausted from a very busy day.

Considering Next Steps

The normal routine kicked in this morning on hyper drive.  Jackie was up, had his meds and spoke with Dr. K all by 8:20.  Jim and I were heading to one of the two day rehabs we are checking out for Jackie as next steps after leaving Magee’s inpatient hospital.  We have a couple weeks to go, but need to make the decision on next steps and start preparing now.

Aunt Cristal and Uncle Jody came up to spend some time with Jackie while we were on our whirl wind trip to Hershey and back.  We had set up an appointment to tour the Penn State Hershey Rehab Hospital  – Day Program.  The inpatient portion of the facility is around 4 years old and the Day Program just opened in May.  There is a small staff for the Day Program since it is just getting started and the patient count is low.  Overall there are about 50 therapists covering different specialties in the hospital. We also met the Physicians Assistant to the doc who would manage Jackie’s medical care.  She has worked with many TBI patients Jackie’s age.

After the tour we hopped back in the car, picked up snacks at one of the turnpike rest stops along the way and were back at Magee in time for his afternoon therapy session.

While we were away Jackie had speech with Becca.  They worked on memory and other exercises.  They also spoke about college and getting back some day.  After speech Jackie took a short nap and then had OT.  Erin and Paula switched spots today.  After lunch Aunt Crissy, Uncle Jody and Jackie sat in the Day room for a little bit.  They were talking and laughing with Rudy, another patient in the hospital.  It was then time for another short cat nap and then PT.

Jim and I returned as Jackie was waking up.  We followed him and Erin to the fifth floor.  Today, Jackie was going to work out on another new piece of equipment.  The hook up and body harness seemed very similar to the Vector.  This time Jackie was on a treadmill.  One of the therapists watched his trunk, one was working the left leg and the other guiding the right to ensure it was keeping the correct walking speed to match the moving belt.  Another therapist ran the computer program.  After the first walk Jackie had a giant smile on his face.  He keeps saying he just wants to be normal again, and this exercise made him feel as close to that as he has come. PTL.  After a short break he took another walk and then rested again.  Based on his BP, that would be his last walk on the treadmill for the day.  It was the most he has done from a cardiovascular perspective since the end of February.  Erin ended the session with an assisted walk down the hall using the walker with the left arm extension.

It was now dinner and Jackie was beat.  We managed to get him through his meal, watch some US soccer and then it was time to get in bed.  We were able to keep him up for a Skyping session with Lindsay and Florent and his evening meds.

Health wise Jackie seems to be back on track.  PTL!  Sorry for the late post today.  I fell asleep writing it last night and did not have a chance to finish it until now.  I will try to get myself back on track with my posts.

Thanks for continuing to follow Jackie’s journey and for your positive thoughts and prayers.

It’s been a while since I’ve posted here and seems like just yesterday when we started this blog. Originally it was created to help calm down the stress of keeping everyone updated with day-to-day details that Mom and Dad just couldn’t handle anymore.

Now, it has become much more than that. This is a safe place for us all to read, hope and continue finding reality checks for our daily lives. It’s a way to keep the faith going knowing that so many are rooting and waiting for the newest post to reach their inbox. People are reading this for you bud. They’re in your corner fighting with you, holding on and lifting you up on days where that seems damn near impossible.

Right now you are going through what no one could ever imagine, but can only guess, is the most challenging time of your life. For being a ‘baby’ still in my eyes it is hard to believe that this is still going on and you amaze me every day!

When you have a bad day or struggle with feelings of sadness again just remember this: You could have given up so easily and become lazy or mean or negative every day while the doctors poked and proded you. They told  you to take medicine, do this exercise, eat this pureed food (thank goodness that phase is over!). The way you handled it all amazed everyone around you. You have become my hero and inspiration for a lifetime ahead. You never, ever, ever EVER gave up or lashed out. Instead you stayed positive, vented when need be and said I love you more times than I can count (when I’m sure the only words you wished to mutter would send Mom into a tailspin).

This is not something we wish upon anyone. You’ve handled it with stride, humor, charisma and even came up with a dance move I admit Florent and I have started practicing just to keep up 😉

We love you so much, the whole community, and especially your big sis. Please keep fighting and holding on and remember how far you’ve come. We are here for you, always and forever.

Love,
Sis

Getting Closer

We let Jackie sleep in as much as we could this morning. The start of weekday therapy sessions was upon us and I wasn’t sure Jackie was going to be physically ready.  Jackie ate a modified breakfast, had his morning meds and spoke with Dr. K. Jackie was ready for speech by 9am.

Becca had Jackie complete memory tasks and review the date and calendar.  He completed some categorization exercises and listened to music.  Becca had Jackie search online for the songs he wanted to hear.

We managed to keep Jackie busy until it was time for PT.  I was happy his stamina allowed him to push through the Monday morning routine.  Erin worked with Jackie on transfers and getting in and out of bed.  He also practiced standing and walking alongside the parallel bars.

Next up was lunch.  We are still watching what Jackie is eating.  When Jackie was finished we had time to get him into bed for a well deserved nap.  OT was next.  Paula has a knack of reading people.  She could tell Jackie was feeling a little down.  She took the time to talk with Jackie and the conversation became an emotional one.  Jackie shared with Paula that it is hard to get out of bed some days because he knows what lies ahead.  When she probed further he said that everything is work.  We can attest to that, after seeing all that Jackie has gone through and all he has to do even to just complete the smallest tasks that all of us do effortlessly without even thinking.  As the session continued Paula teamed up with Erin and they decided to see how Jackie would do on the short set of mock stairs.  It was a challenge with Paula and Erin doing most of the work.  The session was now over so Paula, Jackie, Jim and I discussed how he was feeling and once again tears started to fall.  Jackie is sad about his condition and wants to get back to college.  We tried to reassure him that he will get back and that we will be here for him every step of the way.  I think you must have an idea of how hard it is to see your child that sad.  We reminded him of how far he has come and he seemed to perk up a little.

We got Jackie back in bed for another rest before dinner.  After he ate it was time for a shave and shower.  We got him into bed early as it had been a physically and emotionally challenging day.  We were so proud of Jackie.  He was down and out all weekend and rallied back to work through the first day of the week.

We all complain, it is second nature. At some point stop yourself and put things in perspective and realize that just putting your shoes on could be work.

Getting There

Today we tried to get Jackie back to a somewhat normal routine.  We got him up and out of bed for a tea, toast and banana breakfast.  He takes the most meds in the morning so having even just a little bit of nutrition in the belly helps.  After a short visit to the sixth floor terrace we came back to the room so Jackie could take a nap.  Jim napped with him.

We then got him up for lunch and he was able to eat a little bit more food.  Since it was hot outside we decided to just stay inside for a while.  Then it was time for another nap.  It was my turn to take one.  There is a chair in the room that pulls out flat to serve as a bed.  You may not think it would be comfy, but based on what we slept on in the hospital, this is actually not that bad.  Jim said Jackie and I didn’t move for at least 1.5 hours.  It also took a while for us both to wake up.  I think we both could have slept through the night.  Needless to say, Jim was persistent and we were up and ready for dinner.  Jackie ate a little bit more and also drank more.  PTL.  We decided to go to the second floor terrace to open some cards.  We are behind in opening them because we like to open them with Jackie but are limited to the number we can read at one time.  It is not because he tires, but because every time he cries.  When we ask why, he says that everyone is so nice to think and care about him.  It is tough for Jim and I to hold it together.  We came back to the room, watched a little TV and then got Jackie in bed early.

Jackie seemed very tired all day again. I know how I would feel after being sick, so adding his current condition to the mix must make him even more tired than any of us would feel. We started to see small glimpses of his beautiful smile tonight after dinner and he even laughed a little bit.  PTL.  I think it will just take time for him to get back to normal.  Tomorrow starts the new week and many therapy sessions.  Fortunately this weekend he did not have any scheduled.

I hope you have a good week, full of love and laughter.  We feel your love and support and we thank you.

Sick Day

Jackie did not feel well all day. He ate and drank very little. For the majority of the day he rested or slept in bed.

By evening we were able to get him to sit in his chair for about two hours. Doesn’t sound like a lot but it was. He also had the option for a bed bath or shower and he chose the shower. All positive signs that he was starting to feel better.

He had a restful night. We are hoping that a low key day on Sunday will be what he needs to recover completely.

Don’t take your days for granted. Have fun, focus on what is truly important and be healthy.