Sunday, October 12

Jovie And The Surprise

We all woke this morning anticipating the arrival of our family dog Jovie.  An 80+ pound Golden Retriever with an exuberant amount of love to share.  We haven’t seen her since before Jackie’s surgery in early September and could not wait to be reunited once again.  Jim went to the lobby to meet our very good friends who have become our consistent Jovie taxi, and was greeted with a huge furry hug.  Our friends said that she slept most of the way until they reached the city limits.  At that point Jovie was up, looking out the window and I truly believe could sense we were near.

Jim and our friends met Jackie and I sitting on the second floor terrace.  I received a similar greeting as Jim, but it was short-lived as Jovie spotted Jackie. She made a beeline to his chair, put her paws gently on his lamp and gave him kisses as the beautiful reunion began.  I know I have talked about this before, but there is a calming factor that a family pet brings to a household.  It is like an anchor of love that consistently grounds its members, day in and day out.  We are fortunate to be able to experience this feeling miles away from home when she visits. Jackie experiences even more. His facial expression tells it all as he completely focuses on her and somehow pushes the reality of his situation aside.  So many things have changed in his life, but the love of his dog is something that has never wavered, and something he can always count on no matter what he looks like or how he feels.

We all were catching up and enjoying the beautiful fall day.  Our friends had made a lunch date with their friends in the area and would return later in the day to take Jovie home.  We had promised Lindsay that we would share pictures from the day since she and Florent wouldn’t be here. We just got done talking about them when the automatic, sliding doors opened to the terrace and there they were.  They had surprised us with a visit and the tears and fur were flying.  The most special part of the surprise was that Lindsay had told Jackie that they were coming a couple days ago while they were on the phone together, and he didn’t spill the beans. When asked by Dr. K on Friday, if he was having any visitors over the weekend, Jackie simply replied, “Jovie.” The look on Jackie’s face was priceless when Lindsay and Florent walked in.  He had done something on his own, which is rare these days, he had pulled off the surprise. PTL

The afternoon hours went quickly.  It was one of those times you wish you could pause and keep replaying over and over again.  To have our family unit together was so incredibly special.  We cannot wait to get home so these moments can last even longer.  We laughed, we hugged, we cried and got caught up with each other’s lives.  It is always hard to say goodbye, but we are hopefully getting closer to going home and that makes things a little bit easier to handle.

The rest of the day included the usual wheelchair pull down the hall on the second floor and the rests in bed with Jovie by Jackie’s side. I’m hoping these tastes of home continually encourage Jackie to keep staying strong and to realize that it will only be a matter of time until we get there once again.

Around the same time our friends came back to take Jovie home, Jackie’s spasms started to kick in and he was getting tired.  We went back to the room for a quick snack and then Jackie showered and headed to bed.  He had a fairly restful nights sleep, one I hope was filled with dreams of home and a future that is still full of the same goals, just with an extended timeline.

We are blessed with support from so many family members and very good friends.  I just wanted to send a special thanks out to MA.  Our dear friend who has temporarily adopted Jovie.  She has cared for Jovie as if she were her own, and her family and their friends have created an incredibly loving home away from home for her.  We are touched every day by her kindness and hope she knows how much it means to us.

“Don’t wait for extraordinary opportunities. Seize common occasions and make them great.”
~Orrison Swett Marden


Saturday, October 11

Game Day

The only therapy scheduled for Jackie this weekend was Recreational Therapy and for some reason Jenna was not able to work today.  We decided to have our own session and hooked up our Wii system to the large screen TV in the gym.  Before long we were in the middle of a three game bowling series.  It was Jackie against me.  It is common knowledge that our family is highly competitive.  It has never been a negative thing, just something that makes even the smallest game that more interesting.  Needless to say Jackie and I were in a heated battle for bowling bragging rights.  I had asked Jackie when we had played once before if he wanted me to purposefully let him win and he said no.  In fact, if you have even a little bit of a competitive nature, having someone throw a game so you can win is way worse than losing.  Needless to say we had a great time and Jackie was getting much better at using the paddle and releasing the B button on cue with each game. PTL Even though Jackie was getting uncomfortable in his chair, you could tell he didn’t want to stop.  Ultimately pain prevailed and we went back to the room for a break and some banana whip.

While snacking we turned on TV and caught two wildlife shows, one hosted by Jeff Corwin.  We used to watch his nature shows all the time when the kids were younger and Jackie seemed interested.  I’m not sure if it was because of his love for animals or if he remembered Jeff from earlier memories.  Either way it was helping keep Jackie’s mind off of his pain and the uncomfortableness he felt in his chair.

We helped Jackie get in bed for his nap and I headed over to the hotel to shower. When I returned the boys were up.  They both had taken a little nap. After a bit of laziness and lounging in bed we had to persuade Jackie to get up.  After all it was a rainy day and being in bed just seemed like the right place to be.

Once up, we decided to head to the gym again.  I put in some laundry and Jackie and Jim played more Wii.  Bowling was first and then golf.  After several games Jackie’s tolerance was starting to get low so we went back to the room.  Jackie ate a Magnum bar and was still hungry for more.  We ordered some take out and included a side of mashed potatoes and gravy.  Even though we ordered from an Italian restaurant the potatoes were excellent.  We all enjoyed eating and watching some college football.  Jackie was starting to become restless and it seemed as though some spasms were returning to his right hand.  We ended up feeding him the second half of his meal.

After letting his food settle, we helped him get into bed. He had been sweating more than normal in his chair and continued to seem flushed.  Alter about an hour of restlessness we had to change his shirt and pillow cases as they were wet. The dosage of one of his new meds was increased, and we believe this must be the culprit for these new symptoms. It took until midnight for him to truly settle down, but he finally had good periods of rest.

We thank all of you for following Jackie’s marathon to recovery and for keeping him in your positive thoughts and prayers.  Each day and night can include incredible feelings of joy or periods of frustration and sadness.  We like to focus on the joy and hope that each day will be filled with more happiness than the day before.

Don’t give up. Don’t lose hope. Don’t sell out.
~Christopher Reeve


Friday, October 10

A Routine Day

This may sound like a boring title, but to us routine is a beautiful thing.  Jackie’s nutrition now runs until 8:30 in the morning to maximize his overnight caloric intake.  This allows him to sleep in since he doesn’t need to be ready for his first therapy session until 9am.  To try to interject a little bit of fun in the morning, we decided to have a special greeting waiting for Dr. K. One of the staffers had provided Jackie with cans of silly string to use when he wanted to have fun.  Today was a perfect day to get out the cans.  Dr. K and his resident came into the room and as soon as they said hi, Jackie reached under the covers and sprayed them with the stringy mess.  Jim helped to ensure Jackie’s finger was positioned correctly on the can.  We all laughed.  It was a great way to start a Friday.

Becca was off today so one of the newer Speech therapists worked with Jackie.  She took Jackie to her office and they worked on some things that Becca had suggested.  Jackie ate some soft foods under her supervision and also talked about basketball.  Overall it was a good session.

We stayed in Jackie’s room prior to PT and the hour went quickly.  When Erin arrived for PT we felt the need to plan another silly string attack.  This time the victim was Mark.  He was the mastermind behind many recent pranks on Erin so it was now her and Jackie’s turn to get him back.  They hid two cans under a blanket on Jackie’s lap and headed to the gym.  Mark was sitting in the office so they called him out and immediately showered him with string.  Something so silly, but so much fun for all involved.  Getting back to business, Erin and Jackie continued to work on his left leg movement and focused on learning how to use his hip flexors to help lift his left leg.

After all the antics of the morning and two therapy sessions, Jackie was ready for his nap, and actually slept this time.  He stayed in bed for a little longer than usual and then got up for his OT session with Paula.  They did stretching while listening to music and Paula also gave Jackie some ice cream.  He enjoyed every bite!

Jackie then had a visit from a of Mom of one of his good friends from freshman year at Bloomsburg.  She and her sister live in South Philly and stopped by with lots of goodies including Magnum ice cream bars and a sweet Flyers hat.  Jackie wore it most of the night.  After their visit he enjoyed one of the bars and then headed to the shower.

Just like his nap, he found it easy to go to sleep and only woke a couple times.  One of  Dr. K’s past residents happened to be on call and stopped in to say hi.  We had a great visit with her. Jackie even showed off some of his movement in his left leg and engaged in a short conversation.  PTL It was really nice to see her again.

The day seemed to pass quickly even though we followed our normal routine.  Hopefully you can appreciate vs complain about daily routines and may even find a way to interject some silliness.

“Only I can change my life. No one can do it for me.”
~Carol Burnett


Thursday, October 9

The Ride Continues

Did you ever ride a roller coaster and wish you could have stayed on for another ride?  I remember days spent at Hersheypark when I felt that way; the excitement and wind in my hair and face was such a thrill and the ride was over way too fast. On the contrary, TBI has Jackie on a roller coaster ride that he would love to stop.  It is ironic because he actually doesn’t really enjoy riding coasters to begin with. The constant ups and downs keep coming and just as we think it is time to get off and take a break, another hill surfaces.

Jackie started the day having breakfast with Becca.  The trend continued and Jackie struggled with swallowing.  Becca was beginning to have to go down the path of coaching each chew and swallow.  It was becoming laborious for Jackie and certainly not enjoyable.  Since Jackie is getting all of his nutritional needs from his feeding tube, we all decided it was best to take a break from daily meal trays.  We would just focus on cold, soft, snack foods that are pleasurable for Jackie to eat.  As much as this is a step back, it makes sense if you look at the overall recovery plan.  Jackie is still adjusting to different meds and to have him struggle with something he doesn’t have to, does not make any sense.  We are hoping this break will not last long.

Jackie rested in his chair in the room until Paula came to get him for OT.  She was bumping up her session timing with him and splitting it in half as she had to leave the hospital early.  She took Jackie to the gym for the first half of the session and then transitioned him to Erin for PT.  A highlight of PT was Jackie’s left leg movement.  He was actually able to lower and then lift his left leg up and down.  PTL

Jackie was getting tired but we wanted him to stay up until after his last half hour of OT, plus Grandma, Grandpa, Nana and John were here for a visit so we all sat outside on the second floor terrace for a visit, enjoying the beautiful day.  The time went quickly and we returned to Jackie’s room for his noon nutrition.  Then there was a little bit more time left for visiting before OT.  To save Paula some time, Jim and I took Jackie to the gym.  He was visibly tired and actually also voiced the same feeling.  Paula had planned another try at the motorized wheelchair.  Even though he was tired, Jackie wanted to give it a go. Jim and I stayed and participated in the session.  Paula had Jackie maneuver the chair out of the gym, on the elevator and onto the outside sixth floor terrace.  There was much coaching done along the way.  Jackie’s impaired vision is a challenge as well as the fact that he forgets to look to the left.  Jim and I were his targets to help keep him going in the right direction.  Paula stayed by his side to take over the controls when necessary.  Overall he did really well.  It was such a joy to see him laughing and to see the wind in his face as Paula let him pick up the speed on the open space of the terrace. We also joked about not hitting walls and other objects.  Jim and I could see first hand how using this type of wheelchair will help therapeutically in many beneficial ways until it is time to move him back to a conventional chair.  Jackie still needs to get some practice under his belt before he makes the transition, but this is a work out that Jackie will look forward to.

We got Jackie in for a late nap and he fell asleep right away.  He was beat and needed some time to recharge.  After a little over an hour he woke up and finished visiting with his grandparents until they had to go.  Instead of going to the cafeteria, Jackie enjoyed a Magnum bar on the second floor terrace.  We moved up to his room so Jackie could get some meds and then we all watched some TV.  Jackie said he was still hungry so we gave him a frozen dessert we still had in the freezer.  It was a banana and strawberry whip and it is everything that Jackie needs, cold, nutritious and soft.  Colder foods help stimulate the swallowing response and soft foods are obviously just easier to eat.  After eating a good portion of the dessert we got Jackie ready for bed.

We connected with Lindsay via phone for a quick catch up.  We have found that Jackie responds better when he holds the phone to his ear.  To our surprise he had the longest conversation he has had with Lindsay in a while. PTL. Granted he only spoke a couple words, but this was huge progress from the last call.  Lindsay is very good at mixing conversation with wait times of silence for his response.  After they were done, I was able to catch up with both Lindsay and Florent! The night ended with Jackie falling asleep as he watched the opening home game of the Flyers.

Life takes all of us for rides, how we handle the bumps and hills is up to us.  We can choose to complain every step of the way or choose to hold on and ride it out focusing on only the positives.  Jackie is doing just that and this marathon will eventually stop at the station and it will finally be time to exit the ride.

“Success goes to the ones who do. Get up. Show up. Throw up if you have to. Do it afraid, but do it no matter.”
~Toni Sorenson


Wednesday, October 8

Keeping Pace

Today Jackie kept pace with his therapy schedule.  He had some ups and downs, but we certainly know by now this is just to be expected.  Dr. K was in early this morning and we all saw some positive movement in Jackie’s left leg.  PTL. I am hoping that Jackie is internalizing the importance of this progress, as it is the stepping stone to getting functionality back on the left side.

Jackie had an early start with Becca as she took him in the dining room on the floor for breakfast.  We are not exactly sure why, but Jackie did not eat well.  He may have still been tired or it could have been the environment.  Either way, Becca brought him back to the room and felt a little break would be good.  We stayed in the room for a while and then asked Jackie if he wanted some Magic Cup.  This is a nutritionally packed, high in calorie ice cream.  He did and started eating a couple bites.  Becca stopped back in and they finished the session in her office. She said the back half of the session went better and he even ate more.

The sun was shinning so we decided to go to the second floor terrace for a shot of Vitamin D and a cool fall breeze. It was beautiful out plus our little screamer was audible from the playground, all was right in the world.  We reclined Jackie and he took a little nap.

We came back inside a couple minutes before PT was to start.  One of Jackie’s friends bought him a Nike b-ball cap with the word BEAST on the front.  It was a surprise and Jackie loved it.  We were all actually excited to see Erin’s face when she saw him with the hat on, after all she coined the phrase  ‘beast status’.  Needless to say she loved it and had Jackie keep the hat on the entire session.  Timing was perfect as Erin had scheduled the Vector for his work out.  The session went well, fueled by the new apparel. Jackie’s left leg is getting so close to trying to purposefully move or at least be swung into place.  PTL

You would think Jackie would fall asleep after such a busy morning, but when he got in bed for his nap he only rested. Paula picked him up for OT and the two headed to the gym.  It is now time to start working on Jackie’s neck strength.  He has been relying on a fairly large headrest on his wheelchair and it is time to start weaning him off.  Paula put a smaller headrest on his chair and wants Jim and I to keep an eye on how he is doing.  Eventually the goal for coming home will be a chair without a headrest. There was a surprise bonus to the session.  Joey the therapy dog had a cancellation with another patient and was available.  Jackie gave commands for Joey to do all kinds of tricks and of course rewarded her with treats.  Everything was done in the direction of Jackie’s left side.  The hope is that the more he tries to do on that side, the faster functionality may return.

After some afternoon meds we decided to head down to the cafeteria for an early dinner.  Until Jackie starts swallowing a little better, Becca wants us to have Jackie eat the soft stuff.  He enjoyed his mashed potatoes with extra gravy.  The cafeteria was out of Magnum ice cream bars, but luckily I was able to purchase more at a CVS in the city on the way back from an errand.  Jackie enjoyed his treat on the second floor terrace.  He loves the taste while Jim and I love the calories he is consuming.

We headed back up to the room for a shave and shower.  Then it was time for evening meds, and the start of his nightly nutrition.  Jackie’s spasms have continued to reduce in frequency to the point where they are more of a nuisance than a full out sleep stopper.  PTL

Hour by hour, day by day and guided by prayers, positive thoughts and patience, Jackie continues to keep pace on this marathon to recovery.  We just told Jackie that our dog Jovie is coming for a visit on Sunday.  We are all very excited and it should help keep his  spirits up through the weekend.

“We must be willing to get rid of the life we’ve planned, so as to have the life that is waiting for us.”
~Joseph Campbell


Tuesday, October 7

Busy Morning

This morning Jackie woke up to a busy schedule.  First up was an ADL session with Paula, focusing on prepping for the day.  Jackie worked hard as he normally does during these sessions. He is getting better at putting on his shirt but is still unable to do this by himself.  After washing his face and brushing his teeth he was ready to spend some time with Joey, Magee’s therapy dog.  For those of you who have followed the blog, you know that Joey is no stranger.  Jackie always lights up when he sees her.  Today was no exception.

Becca had scheduled Joey to be part of her speech session.  The main focus was working on getting Jackie to speak louder while voicing commands. Jackie laughed as Joey stepped on his footrests to get her toy closer to his hand.  He had to say ‘give’ so she would release it.  Joey is trained to respond to whispers as well as normal voicing.  Even though Jackie’s voice was quiet, he was able to have Joey follow his instructions. They played catch and also tug of war.  It was a great session, but tiring.  Jackie rested in his room for the time remaining prior to PT.  Erin was working at one of Magee’s outpatient facilities so Mark picked him up and took him to the gym.  He recognized that Jackie was running out of steam so they had an easier session.  Jackie still took some steps at the end so that his progress would not be stalled. PTL

Nap and nutrition was next.  I decided to take a nap at the same time as Jackie. Both of us slept well even though it was for a short period of time.  When Jackie woke up he was going to have a half hour session with Paula followed by Becca to finish out the day.  Much to our surprise, the short nap ignited Jackie’s energy.  He almost pushed himself up to a sitting position and even was able to balance himself on the side of the bed.  PTL He went with Paula to the gym and had a good work out.  Paula had Jackie call Becca when he was ready to move on to her session.  Becca said she answered the phone and was surprised to hear Jackie’s voice.  All of this is so positive, it makes him feel normal and also is encouraging that he is voicing into the phone. He would do this again later in the evening while talking with Lindsay.  PTL

I had just come back from a Starbucks run when Jackie came back from Becca’s office. We decided to head down for an early dinner and enjoyed some of our drinks until it was time for the cafeteria to open.  Jackie ate fairly well, although he tired half way through his meal. We came up to the the room as we had to wait for some meds, and Jackie enjoyed his Magnum bar while watching sports on TV.

Jackie was definitely ready when we got him into bed.  He was a little restless at first, but then seemed to be settling down for the night.  It had been a day of ups and downs.  Jim and I continually try to figure out the catalyst behind Jackie’s actions. As this can be frustrating, Jim looked at me and said that maybe we need to just stop thinking about things so hard and just chalk it up to TBI.  Knowing every hour of every day could add something new to the equation.

With your positive thoughts, prayers and support behind Jackie, he will continue to rally through each day.  We will continue to encourage and celebrate as each hour unfolds a new leg of the journey.

Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all.
~Dale Carnegie


Monday, October 6

Toughing It Out Through The Tears

Today was an emotional day.  It was the official day of Jim’s birthday.  Jackie’s feelings mirrored those that he felt on my birthday and could be summed up as significant sadness.  He was still in the hospital after all these months and so was his Dad.  Spending his birthday attending to him instead of going golfing or going out to dinner.  We tried to comfort him as we had done before and we are hoping that he truly understands that neither of us could possibly be anywhere else than by his side. It is where we want to be.  There will be a time when we can step back, but now is not the time.

As routine plays out, Becca came to get Jackie and they went to her office for speech. Jackie picked out the supplies and made a birthday card for Jim.  These cards are even more precious than the ones we received when the kids were little.  This card and the writing inside was a sign that Jackie was coming back.  PTL

We all decided to sit on the second floor terrace for a little bit before PT.  Both Mark and Erin were not available so another staffer stretched out Jackie under Paula’s watchful eye. As per usual, lethargy dictates and we moved Jackie to bed for a nap, although rest not slumber was in the plan.

You may remember several months ago when a Philadelphia Flyers alumni came to visit Jackie.  Today, Todd Fedoruk would return for another visit.  It was the first time today, that Jackie brightened up.  He remembered ‘The Fridge’ from his previous visit and enjoyed his company.  Todd was able to get Jackie to softly verbalize more words than we had heard all day.  He makes Jackie feel good and also helps him be mentally tough.  After game injuries, Todd also went through a couple surgeries so the two of them can relate on the same level.  Something, Jim and I cannot do. It was awesome to catch up and our hope is to see him another time before heading home.

Shortly after Todd moved on to visit some other patients, Visa paid a visit.  Visa is the service dog that we met at Jefferson hospital.  She was attending a student health fair at Jefferson and was hoping to visit Jackie at Magee as well.  She is a loving dog, and ironically looks exactly like Magee’s therapy dog only smaller.  Jane, her Mom, helped Jackie interact with her and Jackie was comforted just by stroking the incredibly soft fur on her ears.  He enjoyed hearing how Visa had just provided stress release to students at Jefferson studying for mid terms.  Whether he knew it or not, he was also reducing the emotional stress of his day by allowing Visa to comfort him in a way only a canine can.

Nana and John had come to visit and shared birthday treats for Jim with the staff.  We enjoyed their company and as a surprise, Nana brought her special spaghetti sauce for Jim to enjoy for dinner.  I must say, I tried making it myself, but could never quite get the same taste.  Jim would enjoy his birthday meal.

Before we knew it, Paula came to the room to pick up Jackie for OT.  He had a decent session but since he had not napped, tired quickly.  We headed down to dinner as early as we could, due to Jackie’s fatigue and the fact that it was a shower night.  When we got down to the cafe, I worked on getting Jackie’s tray from the kitchen and also picked up a three layer, strawberry shortcake that Chef Ken had made based on my request.  The cake was big and beautiful. Jackie had a taste of the icing and Jim enjoyed a piece for himself.  We then made some new friends in the dining room by sharing the absolutely delicious dessert.

We brought the rest back up to the room and ultimately shared it with the nursing and therapy teams.  It was then time for a shower and bed.  Each night seems to include a little more rest and a little less spasms.  PTL. Jackie will get through this and the victory will be sweet.

“You can’t be brave if you’ve only had wonderful things happen to you.”
~Mary Tyler Moore