Thursday, July 24

A Sluggish Start

Jackie slept well overnight, in fact better than he has for a while.  We thought he was going to wake up and be ready for the day, but he seemed very sluggish. As we have learned about TBI, take each day as it comes and adjust.  We gave Jackie plenty of time but he did not eat much breakfast.  Dr. K came in and we reviewed some details with him since he will be on vacation tomorrow through next week.  We ended up pushing speech back an hour just so we could give Jackie more time to get through his morning routine.

Jackie went to Becca’s office for speech.  They played Simon Says, worked on memory and attention and then set out for more responses to the cheese steak poll.  No winner has been announced yet, they may be collecting more data tomorrow.

PT immediately followed speech. Erin was back from her conference.  I think Jackie was glad because he had one of the best sessions ever with her.  He practiced standing and pre-walking exercises, walked along the parallel bars and also walked in the gym all with just Erin’s help! Since he was in ‘beast mode’ as Erin called it , she thought why not try the stairs.  If you remember, Jackie only tried the stairs one time before and both Paula and Erin basically carried his weight the entire time.  Erin felt Jackie was ready for another try.  She had another therapist close by just in case, and headed to the stairs.  With just Erin’s help, Jackie was able to go up and then down 4 steps.  PTL!  This is not something he will be dong at home right away, but was a huge accomplishment for the day!

Jackie was exhausted.  We coached him through lunch and then got him into bed for a quick nap.  Then it was up at 2:00 for an early OT session.  We all headed over to the practice bathroom and watched as Jackie transferred from his wheelchair to the toilet to the shower chair and back.  He did this twice.  Jim and I will be trained next week to do these transfers and both of us will need to help to ensure his safety. There was a little bit of time left so Natalie and Pete took Jackie to the gym for some stretching of his arms and legs.  They continue to get tight and spasm.  Stretching helps relieve and prevent this from happening.

Jackie went right from the gym to the dining room beside his room for his first ever group session.  Three of the speech therapists held a brain injury education session.  It was a small group of patients and the goal is not only for patient education but also for patient interaction.  I don’t think Jackie spoke much at all, but the experience was good for him.

Since it was so close to dinner we just kept Jackie up vs getting him in bed for another nap.  He ate better than any of his two previous meals.  Right after dinner we had to take him downstairs for another x-ray.  We need to ensure everything is moving from a system perspective.  Since Jackie only had one nap he was beat.  We decided to get him in the shower and then to bed.  He watched a little bit of a movie on TV and then was ready for evening meds and sleep.

Getting in and out of the shower, going up and down stairs and eating without being coached to swallow are all things many of us take for granted every day.  Celebrate these little things and continue to make the most out of each day.  Jackie does even when he gets a sluggish start.

Thanks for your continued positive thoughts, prayers and support. It means the world to all of us!

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Wednesday, July 23

A Date

There was no sleeping in this morning.  Natalie and Pete were coming by at 7:45 for an hour long ADL, activities of daily living, session.  We made sure both Jackie’s shirt and shorts had the North Carolina b-ball logo on them since Pete is such a Duke fan.  Jackie worked hard to get dressed, wash his hands and face and brush his teeth.  This may not seem like it should take an hour, but it does.  These sessions are hard because it takes a lot of energy and determination.  Frankly as a parent it is hard to watch.  It forces us to realize the ongoing impacts of Jackie’s injuries.  Jim and I will be working with Jackie at home, and as much as I want to help him with everything it is important for him to do as much as he can on his own.  The therapists said that if we have an early  morning appointment, we should help more as the exercise is not meant to be stressful in any way.  We are holding on to hope that Jackie’s left side will re-engage after his surgery, so we just need to stay the course until September.

Jackie started eating his breakfast a little before 9am.  It was tight but he was able to eat, take his meds and still only be a couple minutes late for speech.  Dr. K. came to visit during Jackie’s ADL session.

Becca had a great idea for her speech session with Jackie.  She created a form and had Jackie ask staffers and other patients who they thought made the best Philly cheese steaks.  This exercise would force Jackie to ask questions in a loud voice.  The best part of the exercise is that Jackie gets to enjoy a cheese steak from the restaurant with the most votes.  Becca said Jackie did well in the beginning, but then got tired and it was hard for others to hear him.  She said they will try to ask more people tomorrow.

Right after speech Lori came to Jackie’s room for a half hour of art therapy.  Jackie drew a picture of himself fishing.  Something the boys plan on doing when Jackie is better.  Both Jim and Jackie are avid fishers and continue to tell stories about the big fish that got away.

Immediately after art, Jackie went to the gym for PT.  There was no rest for the weary as Jackie did leg stretches, trunk stretches, standing with squats and even walked along the  parallel bars with only 1 therapist assisting.  PTL!

To say the least, Jackie was exhausted.  We got him in bed for a nap and warmed up lunch when he woke up.  After we were done, Lori stopped back in again.  You see we had asked for some help on a project.  The project was related to a very special date; the day we are coming home!  PTL!! At this point, we are scheduled to be discharged on Friday, August 1.  The new plan will consist of in-home rehab bridging us to Jackie’s surgery in September.  Then there is a very good chance that Jackie will come back to Magee for a couple weeks and then we will head home for good and attend Hershey’s Day Rehab Program.  After talks with the docs and therapists at Magee, we realize that Jackie is jut not ready from a strength perspective to get the most out of a day rehab program.  So we will simply adjust to the new plan as it is best.

Back to art, Lori put together a sign for Jackie’s door that is basically a count down calendar with post it notes.  Jackie wrote the number of days that are left on post it notes and will pull each one off counting down until the day we go home.  I wanted to have a huge celebration and invite everyone but think it is best to do that in the fall.  For now we will focus on getting into a routine at home and continuing to work on Jackie’s strength; after all this is a marathon not a sprint.

Jackie was already tired again so he took another nap and had a late dinner.  We did go outside for a little bit for his protein snack, but it was so hot and muggy we did not stay long.  We came back inside and got him ready for bed.

Jim and I are working out all the details of making sure we have everything in place to care for Jackie properly.  The therapists will be making sure we are trained to the fullest extent possible before we leave.

The date we have been waiting for since February is finally here.  I must say I am overwhelmed with joy that is sprinkled with a little bit of apprehension.  We will no longer be a call bell away from Dr. K. but he will only be a phone call away.

With positive thoughts and prayer we will make it through this next mile in Jackie’s journey.  I can’t wait to see his face when we pull into the drive and Jovie runs out to greet him!!

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Tuesday, July 22

Keeping on Track

We left Jackie sleep in as long as we could.  He ate a good breakfast, had meds and spoke with Dr. K. and his team. Becca came in the room during our conversation since it was time for speech.  We spoke for a little bit more and then Jackie went to Becca’s office.  They worked on memory, attention and of course speaking loud.

PT was next. Jackie worked on Erin’s list of ‘to dos’ including moving himself in his wheelchair.  It may not seem that hard, but Jackie is only able to use his right arm and leg. Propelling the wheelchair on his own takes practice because all of the steering needs to be done with his right foot.  Simply moving the wheel with his right hand moves him to the left, not forward.

After PT Jackie ate lunch and then took a good nap. He was tired and fell asleep quickly.  We woke him up for OT.  Natalie and Pete came in the room, picked up Jackie and headed to the gym.  They continued to practice things that will pay off when we get home like different kinds of transfers. They also stretched out Jackie’s left arm.  They finished up the session with some basketball practice.  Jackie shot the ball standing up which helps with trunk control.  Dr. K. came into the gym and got into the action.  He got some assists as Jackie made some shots.

When OT was over Jackie took another nap.  This was not as long as his earlier one today, but gave him the rest he needed to be able to focus while eating.  Dr. K came into the room and we talked about next steps for Jackie’s system which has fallen back into its sluggish pattern. Grandma and Grandpa said their goodbyes and headed for the train.

We went to the sixth floor terrace for some beautiful night air and also a couple hands of Black Jack. Jim said he was going to win, but ultimately Jackie beat both of his parents fair and square.   We came back down to Jackie’s room and got him ready for bed.

Each day Jackie gets a little bit stronger.  Every tiny step still gets him closer to the finish line.  Our goal is to help him continue to build up his strength for his surgery in September.  After that we are hoping his left side will engage more and we will set new therapy goals. Day by day, step by step we will work with Jackie to keep up his spirits and strength.  Your prayers and support are felt and appreciated and help Jim and I stay positive about the future that lies ahead for Jackie.

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Monday, July 21

Routine

As the work week started today for many of you, so did Jackie’s week of therapy work.  We went on auto pilot into the weekday routine.  Jackie got up, ate breakfast, had meds saw Dr. K and as usual was a couple minutes late for speech.

Becca had to accompany another patient to a test so another Speech Therapist and student worked with Jackie.  They focused the hour on phrase recognition, scanning tasks, memory, and ‘would you rather’ questions.  They held the session outside for a change of scenery.

Since there was only about half an hour to go before PT, Jackie took a short nap in his chair.  It was just enough to get him recharged. Erin is presenting at a conference at the beginning of this week, so Jackie will be working with another therapist until she returns.  Today he worked on sitting balance, transfers and other exercises on the list from Erin.  He also had a new back put on his chair.  This back is the same one that will be on the chair we take home.

Jackie worked hard and was tired but he made it through lunch and was rewarded with an afternoon nap.  He woke up more rested but seemed quiet.  Since Paula is on vacation all week, Natalie and Pete will be working with Jackie.  They did many of the things on Paula’s list including exercises that will help with daily living tasks.  It is not uncommon to see Dr. K. in the gym.  He likes to see how his patients are doing.  He stopped in to see Jackie.  At the time  Jackie was throwing bean bags.  Dr. K. became the human target and challenged Jackie to through the bags at him.  Let’s just say, Jackie’s arm and aim was on and everyone had a great laugh.

We came back to the room and decided to let Jackie take another nap.  We have found that he eats more if he is not tired during dinner.  That strategy worked again tonight and after his meal we went upstairs to group art therapy. All three of us created our own masterpieces and had a fun time.  PTL. Then we went to the second floor for Jackie’s protein snack and then back to the room for bed.

Today was a wonderfully routine day. I hope your routines can be looked on positively and with thanks.

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Sunday, July 20

The Surprise

It was boys night at Magee.  Lindsay and I stayed at the hotel.  Even though the night was short, we were able to catch up and just be girls.  It was wonderful.  When we got to Jackie’s room the boys were up.  Lindsay ran down to the cafe and then we all ate breakfast with Jackie in his room.  After morning meds and some visits from the weekend docs we decided to get some fresh air and sat on the second floor terrace for a while.  As the lethargic pattern continues, Jackie was tired so we went back to his room so he could sleep.

At this point I was so excited I could hardly contain myself.  Jim and I had a surprise lined up and it was about to unfold.  Since Jackie was napping I suggested that Jim and Lindsay take a walk and do a Starbucks run.  What Lindsay didn’t know was that very good friends of ours had driven Jovie up for the day and were waiting outside the lobby.  Lindsay, being the DC city slicker that she is, stays focused on where she is walking and does not look to make eye contact with anyone.  Jim stopped to talk with a couple on the bench outside the entrance. Lindsay took a quick glance and thought their dog was cute.  After a closer look she excitedly said  “Jovie” and was then lovingly mauled by an 85 lb ball of furry sisterly love.  Jim and Lindsay brought her up to the room where Jackie woke up to see Jovie staring up at him.  He had a huge smile on his face and for once spoke loudly so Jovie could hear him.  PTL!

For those of you that have a dog or family pet, I think you understand the feelings of comfort and joy you receive from them on a daily basis.  If you multiply those feelings by the number of days since we have seen Jovie you can begin to understand how much her visit meant to all of us.

Minus the setting and Jackie’s injury it felt like the old days.  So incredibly awesome for the entire family to be together. Jovie has the heart of a therapy dog even though she has not been officially trained.  She was very loving but careful with Jackie both in bed and in his wheelchair.  She also was keeping an eye on all of us,  when one of us left the room, she would lay by the door until we returned.  After we all ate lunch together in Jackies room we decided to go up to the sixth floor terrace for some fresh air.  There were many patients on the terrace as it was a beautiful day. We found a quiet spot and literally had a blast just enjoying each others company and the random acts of Jovie kisses.  Several of the patients came over to say hi to us, ok really to Jovie.  It felt good to be sharing some of her love with others and you could tell for just one moment they forgot about their conditions and were truly happy. One of the patients and her son came over.  They used to have Golden Retrievers so spending a little time with Jovie brought back special memories for them.

Jackie was getting tired so we came back to his room and got him in for a nap. He fell sleep right away knowing that everyone would still be there when he awoke.  I stayed with Jackie while Lindsay and Jim finally were able to take their stroll to Starbucks.

The clock was ticking and we knew our remaining time with Jovie was limited.  We actually had already pushed her pick up time back an hour.  Jackie was awake now and we joked and laughed about funny things that happened earlier in the day like me trying to carry something and also steer Jackies wheelchair while Jovie was pulling him down the hallway.  Lindsay actually got video of me failing at my job and running him into a wall; thankfully it was before Jovie got up to full speed.  There was also the time when Lindsay was helping to take one of  Jackies sneakers off and Jim accidentally hit her in the face with the other one.  Thankfully she was not injured and we could use the incident as comic relief.

Our friends returned for a short visit and we all said our goodbyes to Jovie.  We are hoping for a finalized discharge date soon and anticipate getting home sometime in August.

The dinner trays arrived and Jackie started eating while Jim took Lindsay to the train station.  We are hoping to see her again soon as well as Florent.

The weekend was wrapping up.  Jackie, Jim and I fell back into our normal routine and went to the second floor for a quick protein snack.  Then it was back to the room for a shave and shower.  Jackie went to bed later than normal but we didn’t care.  He fell asleep quickly knowing the next day was the start of the week and the beginning of therapy sessions.

I found a quote from Gilda Radner, one of my favorite comedians who has since passed.  It is about dogs and life and I wanted to share it with you.  She said, “I think dogs are the most amazing creatures; they give unconditional love. For me they are the role model for being alive.”

Live simply and love unconditionally then take all the rest as it comes.  As always, thank you for your positive thoughts and prayers.

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Saturday, July 19

Family Time

Even though Jackie had three therapy sessions today we let him sleep in.  He had a really long week and had been very tired every day.  Since his breakfast tray was sitting in the room for a while I went downstairs to the cafe and was able to get fresh pancakes made for Jackie.  I brought them up to the room and he really enjoyed them. His appetite including liquid intake was off all week, but this morning he seemed to be back to normal.  PTL!  He ate a very good breakfast, had his meds and was ready for a continuous stream of therapy sessions.

Right before they started we went down to the lobby to wait for Lindsay.  She took the train in and was cabbing to Magee.  We had just made it down to the lobby when she walked in.  I can’t tell you how wonderful if is to have her here. Jackie and Lindsay hugged each other and then we headed back up the elevator to start the day.

First up was PT.  Erin was volunteering for Magee’s “Walk It Out” event, a 24 hour step-a-thon to benefit spinal cord treatment and research, and was not working.  A seasoned PT who used to be Erin’s supervisor worked with Jackie.  Erin left a long list of things she wanted Jackie to do.  Most of the things got checked off.  He practiced sitting, standing, putting weight on his left leg while standing and he also walked both in the gym and along the wall.  To say the least it was an exhausting but good session. Erin will be happy. Lindsay also participated in the session and was Jackie’s focal point for siting balance as well as assisted when he was standing.

Jackie’s lunch tray was in the room when we got back from the gym.  We kicked in gear and made sure he was able to eat in enough time before OT.

We had to give Jackie a pep talk to keep his stamina up.  Like Erin, Paula had left a list of things for Jackie to work on.  He completed practicing transfers, and had his trunk and arm stretched.  He ended up tuckering out at the end of the session, but still had a half hour of rec therapy to go.

Both Nana and Lindsay attended his rec therapy session.  Jenna kept it low key because she knew how tired he was.  She had Jackie use the iPad and they watched a funny video on YouTube.  By this point Jackie was falling asleep in his chair.  We got him in bed for a well deserved nap.

He slept for a while and was recharged for dinner.  Just as he was starting to eat we got news that the ultra sound tech was finally on the way to Magee to do his scan.  We had him eat only a small portion of his meal since we knew he would most likely be laying down for the test.  Once the ultra sound was completed we moved into the family dining room next store and Jackie finished his meal.  It was so nice to have a family dinner together even if microwaved chicken nuggets and italian take out was on the menu.  Jackie was getting tired again but had just enough energy to take a trip to the second floor terrace for his protein snack.  We also found three fudgesicles in Jackie’s freezer bag so Jim, Jackie and Lindsay all enjoyed their treats together.  It was a beautiful night, I felt blessed to have my little family unit all together.  Jackie tired quickly so we headed back to his room for evening meds and bed.

Tomorrow there are no therapy sessions scheduled for Jackie so we are looking forward to more family time and an easier day for Jackie.

In an instant everything changed in our lives.  Jim and I continue to stay focused on each day and have many emotions that have been tucked away.  Lindsay is missing her daily talks with her brother and with Jim and I. She is juggling her emotions while continuing to keep her life on track with work stress added to the mix.  I guess you could say that we are also experiencing symptoms of TBI.  We constantly remind ourselves that with time we will help Jackie reach the goals he had prior to February 23.  Until then we will support each other every day with the common goal of overall healing.

Feel blessed every day and be kind to each other.  Life is too short and unpredictable to feel or act any other way.

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Friday, July 18

Never A Dull Moment

By the time I got to Magee this morning, after my night at the hotel, the boys were awake and Dr. K had already stopped in.  There was concern that Jackie may have something brewing in his urinary tract. The day included an x-ray and an ultrasound is scheduled for tomorrow.  Dr. K has been wonderful and has alerted the weekend staff of any possible next steps.  Jackie is not in any pain.  PTL

After breakfast and meds, Jackie headed to speech.  Becca worked with him on his attention and talking loud while texting using the talk to text feature. We decided to start introducing Jackie’s cell phone back in during speech therapy. Jackie is not yet ready to have his phone back on his own.

After speech there was a short break before OT started.  Since Paula is on vacation, the duo of Natalie and student Pete will be working with Jackie.  They continued Paula’s progress with transfers from Jackie’s chair to the shower.  They also stretched Jackie’s left arm and played standing tic tac toe.  Even though Jackie is holding on to something and the therapist is also there for assistance, it helps with Jackie’s overall trunk control and balance.

Jackie was tired.  Almost too tired for lunch but we coached him through it.  We  wanted him to eat and take a nap prior to his PT session.  We managed to get both done.

Erin moved out of the morning spot today since she reserved the treadmill for Jackie’s workout.  Jackie did well, especially on his last walk.  He is assisted by a couple of therapists who switch position throughout the session.  Erin leads the team since she knows what works best for Jackie.  She finished the session with a walk down the hallway.

As you can imagine, Jackie was exhausted after PT.  We got him back to the room and in bed for a rest.  He had a very light dinner.  He got a shower and then headed to bed.

When asked yesterday what is his goal.  Jackie didn’t say going back to college, he said getting out of bed by myself. With prayers and lots of patience and time, I know he will get back to school but for now, simply getting out of bed is enough.

Lindsay is coming tomorrow for the weekend.  It will be great to have the family together again.  I hope your weekend is filled with love and appreciation for the most basic things in your life.

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