Tuesday, July 15

A Good Day

Jackie’s day started with ADLs, or activities of daily living. Paula felt some male bonding would be good for Jackie so had one of the PT students and his mentor work with Jackie first thing in the morning.  He helped Jackie with dressing and brushing his teeth at the sink while standing.  We were joking with the student because he was helping Jackie put his North Carolina shirt on and he is a Duke fan.  ADLs always take a little longer than planned so Jackie’s schedule got pushed back.  He ate breakfast at 9am, got his meds, talked with Dr. K and his team and then had speech at 10am.

Becca worked with Jackie on answering and asking questions and also did memory and thinking exercises.  During the session I was on my phone and a text came in.  It was a number I didn’t know but the message read “It’s Jackie” followed by two smiley face icons.  Jackie had used Becca’s phone and sent his first text since February – a keeper for sure.  PTL

Jackie went right from speech to PT.  As always, Erin gave him a great work out. He walked with Erin and another therapist as well as just with Erin and the walker with the arm extensions.  It was now lunchtime and even though Jackie was tired he was still hungry.  He ate a good lunch and just as we had him ready to go to bed for a nap,  Paula came in the room and wanted to take Jackie to the gym.  Jim and I went to talk through some things with our case manager and also with Dr. K.

After our meetings we met Paula and Jackie in the fourth floor lobby.  Paula and her team had performed a test on Jackie and also treated him based on their findings.  Jackie had been mentioning that he has been dizzy during his therapy sessions and it has been hard for him to stay centered while sitting.  This prompted the test that resulted in a treatment which corrected the placement of crystals in his inner ear.  When one or more of these crystals is dislodged from the membrane it can cause dizziness, nausea and instability. The treatment seemed to work as Jackie was able to sit on the mat by himself and was able to correct himself without being coached.  PTL.

Jackie was unable to take a nap in bed as he had to stay sitting up with his head straight until 7pm.  He ate dinner and then closed his eyes and relaxed in his chair.  It is important to do this so the crystals do not move again.  We got Jackie in bed after 7pm and kept his head elevated for a while.  We should know tomorrow if the treatment held.

Overall Jackie had a good day.  We continue to feel your love and support and are thankful for each new day of hope and healing.

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Monday, July 14

A Yo-Yo Kind Of Day

Jackie woke a little earlier than normal today and did not fall back asleep.  We let him rest in bed and then got him up, dressed and ready for the start of the week.   Jackie had breakfast, spoke with Dr. K and took morning meds.  As per Jackie’s usual schedule, speech was first.

Becca came to pick him up and had a high school senior with her.  She was shadowing Becca to see if this was a field she was interested in majoring in.  Jackie greeted them with a strong audible voice.  Becca was thrilled and actually taken back by how well Jackie sounded.  One of the medical students who is following Jackie stopped by Becca’s office.  They played Guess Who and Black Jack.  They also were playing some of Jackie’s favorite tunes.  When they came back to the room, Jackie said he won all of the games.  I’m not sure if that is true, but he had a great session.  Becca actually said that she would now call him Mr. Semi-loud instead of Mr. Quiet. Jackie was starting out the day on a high note.  PTL.

He got very tired after speech and was back to being very quiet and subdued.  Erin came in to get him at 11:00 and tried to get him excited about her PT session.  Jackie walked on the Vector machine today and then took some separate walks with Erin and Mark, the PT manager.  Erin said the session had it’s ups and downs but was better than she expected based on how Jackie was feeling. We barely got him through lunch he was so tired.  He took a nap and woke up with more energy.

Paula came to get him and he seemed to be quiet once again.  They had a good session even though he had slipped back into his Mr. Quiet alter ego.  Paula worked with Jackie to stretch many muscle groups.  This stretching will help when Jackie practices his hygiene.  Jackie and Paula also worked on sitting balance and standing.  The medical student stopped by the gym to check in on how Jackie was doing.  Jackie’s challenge for tomorrow is to remember his name.

Jim and I picked up Jackie in the gym and came back to his room for dinner.  He ate a good meal but seemed to be getting tired again.  We were planning to attend group art therapy in the greenhouse, but Jackie was just too sleepy.  The boys worked together to shave Jackie and then it was an early shower and bed.  We had to wake him for his evening meds.  We decided to both stay tonight as there were bad thunderstorms in the city and walking back to the hotel would not be fun or safe.

I feel like a broken record, but TBI is tough and unpredictable.  The best way to tackle it is head on and in the moment, rolling with its ups and downs.  After all this is a marathon, not a sprint and the distance traveled each day will slowly but surely get Jackie closer to the finish line.

Thanks for all of your positive thoughts, prayers and support.

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Sunday, July 13

A Busy But Good Day

We woke Jackie as late as we possibly could.  Like yesterday, today was stacked with therapy sessions.  We knew he wouldn’t get a break until early afternoon, so wanted him to get as much rest as possible.

He started the day with OT.  A weekend therapist worked with Jackie and began the session with stretching exercises.  These exercises worked all different muscle groups. They also worked on sitting balance while playing bean bag tic tac toe.

Jackie went right from OT to speech.  He had a therapist we had never met before.  She worked on Jackie’s speaking volume and pronunciation.

It was now lunchtime and Jackie had to be ready for PT by 1:00pm.  We managed to have him eat enough lunch to hold him over till dinner but not enough that would make him too full for his work out.

1:00 pm came quickly and Karen was his therapist.  She had worked at Magee full time before and now is working part time here.  I’m finding that there are many female therapists with similar stories.  It is great that Magee recognizes the importance of families and works with their staff to bring them back part time after having children.  Karen stretched Jackie and then worked on standing and sitting exercises. She also had him do step ups while standing.  The session ended with a walk across the gym using the walker with the arm extensions.  A PT aid supported Jackie’s trunk while Karen worked Jackie’s left leg.

We got back to the room and at this point Jackie had not napped all day.  We still had Rec therapy at 2:30 and gave Jackie the choice to either take a nap and skip Rec therapy or try to make it through and then nap.  He decided to try and make it through and did well.  He played Wii fishing again and Jackie recorded the top score.  We all had fun.  Jim and I were cheering for him like he was participating in the BassMasters championship.  It was fun, we were glad he stuck it out.  We got him in bed as soon as we got back to the room and weighed him.  He weighed the same as last week which was good considering he did not feel well for many of those days.  PTL. He ultimately only slept for about 40 minutes.  He must have smelled the dinner trays.

After dinner and some meds the boys accompanied me to the gym where I did a load of Jackie’s laundry.  Jackie worked on moving his wheelchair on his own. Since all the work is basically in his right leg, it is very tiring.  If he keeps working at it I’m sure he will master it soon.

We then took a quick trip to the second floor terrace for Jackie’s protein snack.  It was very hot and muggy so we did not stay out long.  Then it was bed and evening meds.

Tomorrow we start up all over again.  Little by little Jackie’s strength and endurance will continue to build. We will be patient and celebrate every smile and every step along the way.

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Saturday, July 12

Come Back Continues

Once again we let Jackie sleep in as long as we could.  He had breakfast and morning meds by 9:15.  Therapies were scheduled for Jackie all weekend.  The extra sessions will help keep Jackie on track since some of his work outs were not as productive last week due to his fatigue.

First up was Rec therapy with Jenna.  We went to the gaming room on the fifth floor and Jackie played Wii fishing.  Jackie and Jim love to fish, so this was a fun game to play. Jenna incorporated a trunk work out as well as hand eye coordination. Jackie sees Jenna tomorrow and hopes to increase his score from today.

OT immediately followed Rec therapy.  Paula was not working this weekend so another therapist worked with Jackie.  She stretched Jackie’s left arm and shoulder, worked on sitting balance and transfers.

Jackie was getting tired so we put him in bed for a nap.  We let him sleep past lunch since we knew Lindsay and Florent were coming and were going to be able to stay until early evening.  We had just moved Jackie from his bed to his chair after his nap when  Lindsay and Florent arrived.  I don’t think I need to tell you how much their visits mean to him.  It was going to be a great day.

Jackie ate a late lunch while Lindsay and Florent also got a bite to eat.  It was soon time for PT.  Lindsay and Florent observed the first half of the therapy session.  They watched Jackie practice transfers.  Then Erin had Lindsay help with the standing exercise by being the focal point for Jackie.  They have found that if there is something in front of Jackie for him to lock in on, it helps keep everything aligned.  This is due to the impaired vision in his left eye.  While the four of us had the chance to quickly catch up, Erin had Jackie walked along the parallel bars and then along the wall.  Erin said it was his best session yet.  PTL. He still needs assistance but is now getting back on track and making progress once again.

After PT Jackie took another nap.  He worked very hard and was tired.  Lindsay and Florent ran to Starbucks and picked up drinks for everyone.  W put Jackie’s strawberry smoothie in the freezer until he got up.

Jackie had a late dinner and then had his protein snack on the second floor terrace while we had take out.  This wonderful day flew by too quickly, and it was time to get Jackie in bed.  Lindsay is coming back both Saturday and Sunday next weekend, so it was not as hard to say good-bye since we will see her again in just a couple days.

We continue to go day by day, but are so incredibly happy and blessed that Jackie is feeling better.  PTL!

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Friday, July 11

Positive Strides

We let Jackie sleep in as long as we could this morning.  We knew he was going to be tired from the long day yesterday and wanted to give him as much rest as possible.  When he woke up he seemed fine, like he has  in mornings past.  He ate some breakfast, had his meds and also spoke with Dr. K.  We gave him an update on how things went at the ER and he examined Jackie.  Everything looked good.

Jackie was supposed to have speech at 9am, but because of our delayed start we pushed his session back to 1 pm.  We now had time to get Jackie back in bed  for a morning nap.  We woke him up in enough time to get ready for PT.

Erin came to get Jackie in his room and took him to the gym.  She had tried different chairs before, but today she found a new chair that would work.  It allows Jackie to move it on his own by using his right foot and leg. There is practice and learning associated with how to do this, but it is giving Jackie a first ever slight glimpse of independence.  PTL. Erin teamed up with Kristen from Rec therapy for the second half of the session.  They played pictionary while helping Jackie stand.  Erin said Jackie was a beast, which means it was a really good workout and Jackie did well.  She said she almost cried.  Our team at Magee was trying everything to engage Jackie during his downward trend this past week, but nothing was working.  To have a successful session once again was big.

Jackie was tired from the workout but we needed to keep him up to eat lunch and then go to speech.  So far it seemed like things were going better, but we were also giving him more naps than usual.

After lunch he  went with Becca to her office.  She kept the session on the lighter side, knowing Jackie was tired.  They played black jack, watched funny videos on YouTube and played the game Guess Who.

After speech we got Jackie back in bed for another nap.  We had a hard time waking him as he was sleeping so soundly.  Paula came in and worked on getting him out of bed.  We then started his OT session with Paula in a bathroom that doubled as a storage area for shower aids.  Paula picked a shower chair and then worked with Jackie to get him in and out.  This was very helpful for Jim and I as we will be Jackie’s caregivers when he gets home.  Paula then finished the session in the gym.  They stretched and worked with Erin to make slight updates to the new chair.

When Jackie got out of the gym, two friends were waiting to see him.  He perked up and thoroughly enjoyed their visit.  After a late dinner he got in the shower and headed to bed. He stayed awake but rested until his evening meds were taken.  He also caught a little bit of the Phillies game.  Go Phils!

He is now sleeping and dreaming.  A good sign that his brain is starting to heal.  PTL.  Time will tell, but it seemed like Jackie was making a come back today, making positive strides toward that finish line.

Thanks for your positive thoughts, prayers and support. They continue to be felt and appreciated.

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Thursday, July 10

Trip to the ER

Jackie woke up and followed the same pattern as he has in the past couple days.  He seems very awake during breakfast but then quickly gets tired throughout the day.  It is only initially after his naps that he seems to be fully awake and himself.

This morning he got tired even more quickly than normal.  By the time he was done with breakfast he was already lethargic and speaking softer. Becca had to attend a test with one of her other patients so Jackie spent a half hour with another therapist in the morning.  Becca would return at lunch with a special treat for Jackie.

After speech Jackie stayed in his room and slept in his chair.  PT and the Vector machine was next.  Jackie was trying to do his best, but his body just did not have the energy to put much into it.  Erin and another therapist were doing a lot of the work.

We took him down to meet Becca for his surprise cheese steak, but his stomach hurt and he was too tired to eat.  We got him into bed and he napped.  He woke up still a little tired, but Becca heated up his sandwich and sat with him as he ate.  As I mentioned before, we are having to coach Jackie a lot during his meals.  Becca does not want to, but if it is necessary may have to consider restricting his diet again.

When he was finished eating he slept in his chair again.  Paula came in and took him to the gym for OT;  she had Dr. K observe.  He was able to connect with Jackie’s neurosurgeon and they both felt it was best for Jackie to go to the ER for a CAT scan.  After the scan and some other tests, the neurosurg team changed the setting on Jackie’s shunt.  The new setting should hopefully give Jackie more energy.

We left Magee at 5pm and didn’t get Jackie settled back in bed until midnight. It was a long day.  We saw one of the ER nurses that helped us the first time we were in Jefferson’s ER.  He was great and kept checking in on us while we were there.  Jim and I were both grateful that Jackie did not need to be admitted to the hospital.  PTL It feels good to be back at Magee.

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Wednesday, July 9

Normalcy

Jackie got up this morning and felt a little bit better.  He ate breakfast, had his meds, saw Dr. K and other attending physicians.  His schedule got pushed back a little so he had about 30 minutes for speech with Becca.

When Becca and Jackie returned to the room, they were holding crumbled pieces of paper. Written on the remains of the paper were things that frustrate Jackie.  Things like not being able to get in bed by himself and not being able to eat on his own.  All things that 19 year olds don’t even think about, they just do them.  Jackie’s left side is holding him back from being like all other 19 year olds.  He continues to say he just wants to be normal.  He is not asking for super hero powers or extraordinary skills, he just wants to do the things we all take for granted.

After speech he spoke with Dr. Todd the staff psychologist and then spent a half hour with Lori for 1:1 art therapy.  This took him right into PT.  It was a lot but he managed to push through.

Lunch was a struggle.  We had to coach him through his swallowing. Drinking out of a straw continues to be a new challenge; one that was mastered just a couple weeks ago.  Becca stopped by to check in on him and decided to take him into the Day room and observe him finishing his lunch.  She also had to cue him and struggled to keep him focused.  Eating is a slow process and usually takes an hour to complete.

After they were done, we got Jackie into bed for an overdue nap.  He slept soundly. We woke him up so that he was ready for OT at 3pm.  Paula came into the room to pick him up and I mentioned that I had wanted to change Jackie’s shirt as it had food stains from his meals.  The boys were ok with the shirt but Paula agreed with me and used the opportunity for Jackie to practice dressing himself.  As he is more tired than usual it was tough for us to watch him struggle to take off the dirty shirt and put on the new one.  Helping him with everything will not allow him to learn.  Paula’s years of experience were evident as she cued and helped him at just the right times to get the most out of the exercise. They headed to the gym and did some stretching and visual scanning exercises focusing on the left side.  They also did categorization exercises.

Dinner trays were only minutes away when Jackie got back from the gym.  He started eating and fell asleep.  Dr. K stopped in and we decided to let him nap.  He got up about an hour later and finished his meal.  He seemed better so we headed to the second floor terrace for Jackie’s protein snack. PTL

Jackie was looking tired so we did not stay long.  We headed back to the room and got Jackie back in bed.  Our nurse tonight was a retired army nurse.  We hadn’t had him in a while.  He is a good guy and takes great care of Jackie.  After evening meds Jackie all of a sudden started talking louder and was even making slight, purposeful movements with his left hand. PTL. We are not going to even try to figure out why, we just celebrated the moment! We took a video for Dr K and Jackie’s therapists so they would believe us.

Our society today is so driven by the need to be super achievers.  To be better than everyone else and always be at the top of the list.  I now can see how normalcy is underrated.  Just being normal is a gift in itself and should be celebrated and appreciated every day.

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