Dear Jackie,

20140322-205545.jpgAlmost six months have gone by and you are still in the fight for your life, struggling every day to complete tasks we all take for granted and do naturally. It has not become easier to adjust to life without you here in the present – telling stories and making visits with fun photos from a summer full of friends, laughter and love. It has been very hard to stay afloat in all of the emotions and this is only from your sister’s side of things who isn’t living within it the way you are.

Everyone says it will get better, it will get easier, things will go back to normal and I want to believe that is true. But the truth is nothing will ever be the same. Everything changed. Everything is different and this, right now, is our new normal. Yes, you will get better and you will keep getting stronger and stronger to the point of walking and hopefully running again. But pretending like this situation doesn’t suck and that it’s easy or on the straight track to being back to the way it was would just be foolish.

You are in a rut right now and trying to dig your car out of the pothole that has come up from nowhere. Just keep thinking about the goal of being home. Think of how nice it will be to sleep in your own bed and hold on to that moment in time. That will get you where you need to go for now and we will help you along the rest of the way. I know you will get better and that no matter how much of you gets better, or how long it takes to get out of this spot, you will never go a day without being loved. You are a hero to more people than you know and keep so many of us from taking for granted this beautiful life.

Keep fighting and we’ll keep pushing through with you. It doesn’t matter that everything is different because you are still here with us. You made it here, to this point. And Jackie, my goodness that is one hell of an accomplishment and something you should be proud of.

Love you lots,
Sis

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Wednesday, July 30

Hurdles

Jackie fell asleep later than normal and had to get up early to be transported to his CAT scan and doctors appointment.  The team felt it was best to transport him via stretcher.  We were not sure how long we were going to be gone so they thought he may be more comfortable this way.  We have transported him both ways and based on the bad condition of  inner city Philly streets, transportation via stretcher makes it a less bumpy ride.  The transportation company was running 45 minutes late, but we managed to get the CAT scan done first and then go to another building a couple blocks away for the doc appointment.  Jackie got sick after the CAT scan.  His neurosurgeon thought Jackie looked stable, PTL, and we are to just hold the course until the surgery.  He is hopeful as we are, that Jackie’s left side will re-engage post surgery.  Time will tell.

On the way back to Magee Jackie got sick again.  We got him up to his room and got him in bed to rest.  More measures were being taken to get his system back on track.  We were counting on them as Jackie cannot keep much down and we don’t want dehydration to set in.

Jackie missed all of his sessions today except for OT.  Paula worked with him at 2pm.  We thought getting him moving again would be good.  Since Jackie was skipping dinner until we could get things resolved, we decided to try some warmth and sunshine on the second floor terrace.  After a short stay we went back up to the room.  Jackie took a shower and got back in bed. Things started to move, but we have a long way to go.  We are giving him nausea meds to hopefully allow him to eat more.

This is just another hurdle Jackie needs to cross on this marathon. We continue to go day by day as it is easier for all of us.  Even though this is a set back we continue to  progress closer to his surgery, which could help speed up Jackie’s pace to get him to the finish line.

As always, thanks for your continued positive thoughts, prayers and support.

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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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