Tuesday, July 29

Ditto

Today seemed like it was a repeat of yesterday.  Jackie woke up and was sluggish.  We gave him a light breakfast and his morning meds.  We have been talking daily with Dr. K’s resident since he is on vacation.  She is doing a great job for being so new to Magee.

It took Jackie a while to get through breakfast so we pushed back speech.  Becca said Jackie was not speaking much and when he did it was softer than normal.  They watched YouTube and it made Jackie laugh, not like usual but at least he seemed happy.  He went right from speech to PT.  Erin is out until Thursday, so her manager Mark is working with Jackie.  Mark has many years of experience and helped Jackie complete a successful session. Paula was also in the gym checking on Jackie and speaking with Mark.

We brought him back to the room and he ate a light lunch.  We wanted to get some food in him before he took his afternoon meds.  Jackie is still having system issues so we went downstairs for a follow up X-ray.  As soon as it was over Jackie got sick. We got him back up to his room and got him in bed.  We are working on helping his system start moving.  Jackie is also getting a cat scan tomorrow and has an appointment with his neurosurgeon.

We continue to encourage Jackie and remind him that all of this is temporary.  We just need to be patient and eventually long term goals will once again be attainable.  Our short term goal of going home on Friday has now been pushed back.  A new date has not been determined.

Be happy in the moment and work on patience.  You never know when you will need to dig deep and wait for something that seems like it will take forever to achieve.

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Monday, July 28

Monday, Monday

For those of you who work a typical week, Monday is usually the least favorite of the days. It is the first day of the week and signifies the end of the weekend.  I would have to say, we felt that way as the day progressed.

Once again we had a slow start. Jackie had a hard time focusing on breakfast.  He did not seem to have much of an appetite and was having some difficulty getting the food on his utensils.  After a conversation with Paula, OT, later in the day, we are wondering if Jackie’s old eating habits are starting to surface.  He never was a big breakfast eater. I could barely get him to eat a breakfast bar. These old habits are actually good because it is a sign his brain is starting to reconnect and process as it had before.  Now, because of his meds, we like him to eat a decent breakfast.  This morning it took a while, but he did.

Becca split her hour in two so Jackie could spend a half hour with the staff psychologist.  In their first half hour together Becca and Jackie tallied up the cheese steak challenge data and the winner is – Jim’s.  Jackie will be getting a cheese steak from there for lunch sometime this week!  She spent her second half hour with Jackie at lunch.  She wanted to observe what was going on herself.

Jim and I grabbed lunch at the cafe and brought it up to the room. Becca and Jackie were done at around 12:30.  Becca said he got tired and basically shut down half way through lunch.  This had happened to us before so we got him into bed for a nap.  We kept our eye on the time as we had to get him up in time to take the meds he missed at lunch and be ready for OT at 3pm.  We were able to get everything done and were ready for his therapy session.  Jim and I headed to our case managers office to review more details surrounding Jackie’s discharge.

We had just finished the meeting and moved to the sitting area outside the fourth floor gym when the resident came to get us.  Jackie had gotten sick during OT.  We got back to the room quickly,  It took a while for his stomach to settle down. Paula stayed with us and then came back to check on Jackie before she left.

We kept Jackie in bed for the rest of the night.  He had a fairly peaceful night. PTL. We will look at today as a brand new day and take things one step at a time.

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Sunday, July 27

A Sleepy Day

Jackie had three therapy sessions today but since the first one wasn’t until 10am we let him sleep in a little.  We were just able to get all of the morning routines done on time.  Since this would be Jackie’s last recreational therapy session with Jenna she let him pick what he wanted to do.  Jackie picked Wii fishing.  He seemed a little tired during breakfast and the trend continued while playing the Wii.  His scores were not close to previous scores and his vision seemed to be off at times.  We will have to keep an eye on this as an update was recently made to his glasses.

We had a half hour to go before Jackie’s PT session so decided to attend the group art therapy session that had started next door in the dining room.  Jackie finished numbering the count down stickers on his door poster and started a drawing.  He drew one blue line and then stopped.  His tiredness continued.  We had a busy schedule ahead and were not sure how Jackie was going to push through.

We went with Jackie to the gym for his 11am PT session.  His muscles were all very tight. The majority of the session was spent stretching out his entire body. Jackie did practice sitting and standing, but his balance seemed to be off.  We went back to his room for a quick lunch since he had OT at one.

Lunch was a struggle.  Jackie was so tired it was difficult for him to concentrate on eating.  We decided to just let him rest in his chair.  The weekend therapist for OT stopped by and we told her how Jackie was feeling.  Once again, the session consisted mostly of stretching Jackie’s muscles.  After returning to the room we were able to get Jackie to eat a little bit of food and got him into bed for a nap.  When he awoke a friend from high school and his family had come for a visit.  This was one of Jackie’s good buddies who had gone through an illness himself, so he can relate to hospital stays and everything that goes along with them.  It was great to see them, get caught up and share stories which helped to jog Jackie’s memory.

Since Jackie was rested he ate well at dinner. PTL. We decided to get some fresh air and went to the second floor terrace for his protein snack.  It was getting late so we went back to the room and got Jackie ready for bed. We are hoping with a good nights sleep he will be ready to start his last week of inpatient therapies here at Magee.

As we are about to embark on yet another transition and milestone in Jackie’s marathon to recovery, we thank you for all of your positive thoughts, prayers and support.  I hope your week ahead is padded with restful nights and wonderfully blessed days.

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Saturday, July 26

Connections

This entire experience has changed things.  I now have an even better appreciation for the daily struggles people with injuries face.  We have met many different families while at Magee.  Even though we all have different stories there is a connection that is understood deep to the core. We have all felt heart ache and sadness and have had to confront things we never imagined we would have to.

We knew Jackie only had one therapy session today so were hoping to have a laid back day.  We let Jackie sleep in and took our time with breakfast.  Before we knew it we saw Jenna and it was time for rec therapy.  We went next door to the family dining room and sat down for a game of Apples to Apples.  We have played this game with our families and were excited to have Jackie play it once again.  Jenna and Jackie teamed up against Jim and I.  We had a lot of laughs and the game helped Jackie with his head position, memory and voicing.

As it had rained we stayed inside and got Jackie in bed to rest before lunch.  He slept a little longer than we anticipated but we had lots of flexibility due to our loose schedule.  After a late lunch we connected with a family a couple doors down.  We have been meaning to do this for a while and it finally worked out.  They came up to Jackie’s room and the kids showed Jackie a game they play with their dad who is also recovering from a brain injury.  They had tennis racquets and hit a large balloon back and forth with them.  Jackie enjoyed playing with them and his hand eye coordination impressed us.  I could tell Jackie was finally feeling like he was able to actually do something well. PTL!  When the family had to go they left the racquets and balloon with us. Just then we had some more visitors that knew a good friend of ours.  They were in town visiting a friend and stopped by for a very quick hello.  I’m glad Jackie was able to say hi and meet them.

We decided to continue our play with the racquets.  It was so good to see Jackie enjoying himself and for once forgetting about his condition. I think this is something we will need to continue and am sure we will find additional fun things for Jackie to do at home.

Jackie was tiring once again so we got him back in bed for another nap.  We all ate a late dinner and then headed to the second floor terrace to get some warmth and sunshine.  We ran into one of the patients who we spoke with when Jovie was visiting.  It was so nice to talk a little more with her and see the progress she has made in just one week.

We headed back up to the room as it was time for Jackie to shave and shower. Jackie fell asleep quickly after his evening meds.  It had been a great day one that allowed flexibility and even more connections.

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Friday, July 25

Successful Sessions

Jackie and I both slept in today.  Jim had left late last night for a whirlwind trip to get some preparations ready at the house.  Both Jackie and I were up a lot during the night so our bodies must have been telling us we needed a little extra rest.  Needless to say we did not get everything done by 9am so speech was pushed back until 10am.  Nana came to spend the day with us.  It was great to spend time with her and was good practice for me to do the transfers since Jim has been doing almost all of them.

Becca came in the room to pick up Jackie and asked how many people he wanted to poll today for the cheese steak challenge. She said he had to say at least three.  To all of our surprise Jackie said 10.  Becca held him to it and within their hour session Jackie spoke to 12 people.  They actually went to the 3rd and 5th floors to find more people.  To say the least, Becca was pleased with Jackie’s goal for the session and his initiative. PTL

Immediately following speech Jackie headed to the gym with Erin for PT.  The session would be split in two since Jackie had an eye appointment at 11:30.  The focus of the first half of the session was walking.  Jackie looked great using the parallel bars!  He is even learning how to swing his left leg so Erin only has to guide it.  It was nice for Nana to see his progress.

We waited for a bit until we could see the eye doc.  She examined Jackie again and made an adjustment to his glasses. This should be our last appointment with her until after Jackie’s surgery.

Even though he slept in, Jackie was tired from his morning sessions.  We really had to coach him to get through lunch.  I was able to get the second half of his PT session moved to later in the day so Jackie could catch a quick nap.  When he woke up we were getting ready to head to the gym when Erin came into the room.  She was planning to work with me on standing and transfers, so we decided to just stay in the room and practice there.  I am feeling much more confident now.

Jackie went to OT right after our session with Erin and started on the mat with a good stretch on is left side.  He finished the session using the Rio machine.  This is the robotic machine that moves Jackie ‘s left arm for him.  Jackie watches the screen and follows the movement with his eyes.  The goal is for the brain to connect what is happening on the screen with the movement of his left hand.  Very cool!

It was time for another nap.  Jackie slept past dinner time so we heated up his meal and had a late dinner.  Jim got back while Jackie was eating.  We finished up and took a snack break on the second floor.  It was a beautiful night and this was the first time Jackie had been outside.

When we got back inside it was time for meds and bed.  It was a good day overall.  We are all looking forward to the weekend to recharge.  Enjoy your weekend and thanks as always for your positive thoughts and prayers.

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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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