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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Thursday, July 17

Routinely Busy Day

Jackie was up on time today.  He was dressed, had breakfast, morning meds and spoke with Dr. K and his team.  Even with all that done we were still running a little late for speech.  Becca stopped by and was able to start his session a little late.  She took Jackie up to the sixth floor terrace for some fresh air since it was so beautiful out.  They played I Spy focusing on things on the left side of where they were sitting.  This was purposefully done to help with Jackie’s vision.  They also worked on memory and attention and of course talking loud.

Next up was PT.  The session was all about walking.  Erin coached Jackie through walking with the help of the parallel bars, the wall and the arm elevated walker.  Rec therapy was also incorporated with the use of a card game.

As always, the lunch trays were being delivered around the same time Jackie’s PT session was over.  He ate a decent amount of his lunch and then was ready for an afternoon nap to rest from his morning sessions and get ready for OT.

As we are hoping to come home in a couple weeks, Paula is working with Jackie on things he will need to do at home like getting in and out of the shower.  She is working with Jim and I so we are trained to assist him as well as be comfortable with the equipment she is ordering.

We went back to Jackie’s room after OT and surprised him with a visit from Visa and her Mom Jane.  Visa was the therapy dog we saw at Jefferson.  Jane will text me when she is at the hospital and if the schedule works out she stops by.  Even though Visa is not allowed on furniture Jane let her sit on the pull out chair that is lower to the ground.  It worked out perfectly as Jackie did not have to lean down to pet her.  Jim and I took turns sitting beside Visa on the pull out.  At one point Jackie was really laughing because Visa ‘s tail was wagging so hard right against me.  Jackie eventually fell asleep while Visa was in the room.  I think it was a combination of Jackie being really tired and feeling very relaxed with Visa by his side.

We said our goodbyes and hope to see Visa one more time before we go home.  Jackie’s dinner tray was already here so he started eating dinner.  He did not get very many bites in when he became very tired to the point that he could not keep eating.  We got him into bed to rest.  We were able to get him out of bed for a half hour and he ate about half of his protein snack.  We then got him back in bed for the night.

Thank you for continuing to send positive thoughts and prayers our way.

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Wednesday, July 16

Two Months At Magee

I’ve written about the challenges of TBI many times in my posts.  We live in the moment, celebrating small victories and dealing with unexpected events as well as we can.  Today is the two month mark since we have been at Magee and I thought it would be good to take a look back at how far Jackie has come since we arrived on May 16.

We  know TBI recovery is a marathon, not a sprint, so eight weeks is not all that long when you look at the big picture.  In those weeks Jackie gained over 30 pounds, had his pic line, trach and feeding tube removed and said his first words. He went from laying in bed the majority of each day to sitting up in a wheelchair the majority of each day and on really good days, he walks with the assistance of just one therapist.  Don’t get me wrong, we have miles to go, but the accomplishments Jackie has made so far are no short of mini miracles. PTL

Jackie went through his normal routine this morning and had a visitor attend his speech session in his room.  Joey, Magees therapy dog, was able to spend the entire hour with Jackie.  Becca’s goal was to have Jackie speak loud enough so that Joey could hear his commands.  First Jackie did a trick with Joey where she put a rope and then a treat on her nose and then caught them in her mouth.  Next Jackie hid a toy in his wardrobe and then gave Joey the commands to open the door and get the toy.  Next Jackie threw the toy for Joey and then he wheeled up to his sink and got her some water.  The last part of the session was probably Jackie’s favorite. Joey jumped on Jackie’s bed and laid with him while Becca ended the session.  It was a great way to start the day!

Immediately following speech, Lori came in the room for art therapy.  Jackie and Lori worked together to create a picture using  water color pencils that when wet look as if the lines were painted.

The rest of the day included OT and PT. Jackie’s seat and backrest got switched to another wheelchair base that is lower and lighter than the one he was using before.  He seems to be able to maneuver it easier than the other one.

During dinner Jackie started getting tired and also complained of a headache.  We gave him some Tylenol, got an early shower and got him in bed early.  When we woke him for his evening meds, his headache was almost gone.  PTL

It is so easy to get bogged down by the limitations that are holding Jackie back from a normal life.  Looking back however puts a positive perspective on the future.  Giving a big thanks to the staff at Magee for helping Jackie hit some major milestones on the road to his recovery.

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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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