Monday, September 22

Back To Work

Just as Mondays symbolize the start of a work week for many, it also means going back to work for Jackie.  Everything we take for granted is work for him. After helping as much as he could to get dressed, he headed to speech with Becca.  Along with oral exercises Becca unknowingly let Jackie indulge in a marshmallow peep and a sugary fruit slice, both favorites. He was able to eat them with no problem.  PTL. Becca continues to make slow but steady progress with Jackie treating and talking with him in a way a 19 year old would enjoy.

We took advantage of the nice day and spent some time on the second floor terrace prior to PT.  Mark and Jackie then had a good session.  It seems like most of Jackie’s muscles are tight due to his injury and his recent storming sessions.  Mark and Jackie worked through it and after some stretching took just a couple steps. PTL

Jackie’s nap could not come soon enough.  OT was next, Paula picked up Jackie and took him to the gym.  The team is still working toward flexibility and range of motion in Jackie’s ankles.  Walking will be tough until they can get him back to where he was.  Paula worked with him on the standing table but could only get to 50%.  Like everything, it will just take time. Each day little by little, Jackie will get there.

After OT we stayed in the room and watched a little bit of TV.  Then it was time for a shower and bed.

I challenge you to think of Jackie the next time you feel stressed, tired or just grumpy.  Re-evaluate the situation, I’m guessing in many cases you have the choice and ability to turn your day around.  Jim recently took a walk to a Staples and bought two white boards.  One of the boards is kept in Jackie’s room.  We are working with him to write a realistic goal on it for each day.  The second board is hanging on his room door where we write an inspirational quote each day.  We are hoping it not only encourages Jackie but may also help other patients or staff at Magee as they pass by.  We thought why stop there when the quotes may also help some of you. To catch you up I have posted two quotes below.  Thanks for your prayers, positive thoughts and support.  Enjoy.

Over every mountain is a path, although it may not be seen from the valley.
~Theodore Roethke

Do something wonderful, people may imitate it.
~Albert Schweitzer

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Sunday, September 21

Rebound

Today Jackie didn’t seem quite right.  I couldn’t put my finger on it.  I’ve learned with TBI trying to figure things out is sometimes futile.  Jackie seemed really tired all day.  Could it be some of the meds that he is still on from his hospital stay are making him tired, could it be he is exhausted from going head on into therapy sessions after spending two weeks in an intensive care environment?  Yes, it could be all or any of those things.  As long as Jackie is staying at baseline or better from a neuro function, then we are ok.  I feel so blessed that Jim and I have been able to go through this together.  My heart goes out to single care givers who walk this road alone.  Some days like today can be harder than others.  You wish from the very depths of your heart that you could rewrite the day of the injury, or that this would be one of the good days not bad ones.  Having someone else here allows constant level setting and daily hugs. Never underestimate the therapeutic value that a warm embrace can provide.  I digress, back to the day.

Today was a day to regroup, rebound and just be.  Jackie had no therapy sessions so he could rest as much as possible, within the constraints of his new daily wake goal.  We did let him sleep in a little until 8:30.  Then it was time to get up and start the daily routine.  Breakfast is the one meal that Jackie has been approved to eat.  I made him the instant oatmeal he had enjoyed prior to his surgeries.  He ate about two bites and then was full.  His nutritional feedings overnight fill his belly and he just does not feel hungry.  In fact, we couldn’t get him to eat anything today.  Every time we asked him if he wanted a particular approved snack, he gave us a thumbs down.  We know he is getting enough food and water through his feeding tube, but would like him to add additional calories by mouth.  I’m sure with time Jackie will get there.

Becca would be proud.  Even though we did not have speech, we worked with Jackie on his speech homework.  Based on a request to Becca, we all were able to do the exercises together, moving the lollipop from side to side in our mouths, moving our tongues in and out, opening our mouths wide and licking our lips.  All things Jim and I did without thinking.  All things that took Jackie a while just to complete at maybe 50%.

As we were contemplating what to do next, Lori the art therapist walked by Jackie’s room.  Every couple of weeks, she has an open group art therapy session in the dining room next door.  We thought it would be a great thing to do. We wheeled Jackie over and got him started with colored pencils. Jim and I also started our masterpieces, Jim a pencil sketch of the architecture outside the big bay window, and I an attempt at a water color grapevine.  Not too long into our works of art, it was obvious Jackie was not engaging, in fact he was falling asleep in his chair.  Lori helped by creating a project for him.  She wrote the word Eagles on a piece of paper and wanted Jackie to color in the letters.  At first he was way out of the lines, but then Jim stepped in and together they made progress within the lines. Ultimately, none of our projects were completed, but we kept them for a future session.  We went back to Jackie’s room, and got him into bed for a lunchtime feeding, meds and a nap.  Just as he was about to fall asleep, Jim’s fraternity brothers stopped by with a half marathon race medal for Jackie.  They had their shirts on and wanted to let Jackie know that their thoughts of him kept them running, even when they wanted to stop.  Jackie held onto the medal and fell asleep.  I hope someday he will be able to realize that he has been a source of inspiration to many and that something positive can come out of very tragic things.

When Jackie woke up it was time to root the Eagles on to victory!  Then the boys went to the gym with me while I did some laundry. We finished the day on the second floor terrace for some fresh air.  Even with the busy street sounds it was a beautiful, relaxing night. We reclined Jackie and he rested with the setting sun on his face.  PTL Before we went back upstairs we read some cards to him that hadn’t been opened.  As you know from the past, reading cards has been an emotional experience.  Knowing that we may be heading down that path, we still felt it would be good for him to read them.  Tears did fall, but we were able to get through more than we ever were in the past.  We hope he understands just how many people love him and are praying for healing.

It wasn’t long before he was back in bed for the night.  We spoke with Lindsay and Florent using the speaker phone.  Even though he was exhausted, he hung onto every word that was said.  I know it is comforting for Jackie to hear their voices.  He smiled at their stories and I could tell he understood what they were saying, possibly jogging some memories he hasn’t thought about since February. They are coming for a visit on Saturday, we all can’t wait!

Tomorrow begins another challenging week of therapies.  I’m glad Jackie had a day to rebound and get some rest.  Hopefully your weekend was peaceful or at least full of moments where you could stand back and realize the blessings of each day.

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Saturday, September 20

A Busy Saturday

It’s the weekend.  I’m sure if Jackie was back at school he would be sleeping in, then getting some lunch with his friends at the commons.  Reality hits hard and getting up at 8am is the schedule now, followed by meds and working hard to use his right side to pull up his pants and put on his shirt. Since Jackie will be missing therapy next Wednesday due to a follow-up appointment with his neurosurgeon, he was scheduled for a full day of therapies today.  By 9am he had speech with Becca.  It was her weekend to work.  It was great to see her on the weekend to keep continuity with the sessions.  Jackie ate part of a banana on his own and had a couple bites of oatmeal.  He even took a couple sips of chocolate milk.  PTL. Then Becca made him work.  They practiced many oral exercises for his tongue and overall mouth movement.  All designed to ultimately help with eating and speaking.

After some morning meds Jackie had just a few minutes to relax in his chair until his PT session.  Karen, a weekend PT staffer picked up Jackie and took him to the gym.  Karen used to be full-time and does a great job with Jackie.  Jackie is working hard in his therapy sessions, but is still struggling with verbalization.  Once again, practicing patience is needed.  Jackie’s body is still recovering from three surgeries and many meds. He will get there with time.

Some of Jim’s fraternity brothers from college stopped by with shirts they are wearing in the half marathon in Philly tomorrow. Their team shirts are Carolina blue and say ‘Jackie’s Journey.’ So cool! It was wonderful to see them and even better to see Jackie’s interest in their college stories.  His face lit up with smiles as each adventure was shared.  Jackie could have listened to their tales for hours, but was exhausted and fell asleep.  Even though it was the weekend, we were trying to stick with the weekly schedule. As hard as it is on Jackie, it will help him get stronger with each passing day.

He was in a sound sleep when we had to wake him for OT.  Natalie was working the weekend and picked him up and took him to the gym.  Nat had her work cut out for her; it would be tough to get him engaged since he was this tired.  The session was successful but not his best.  It was 3pm and all Jackie wanted to do was get back in bed.  We convinced him to rest on the second floor terrace, after all the weather was perfect.  He reclined in his chair with the sun on his face and slept.  The cool breeze felt cleansing and comforting at the same time. We were able to enjoy being outside longer than expected; however, it was obvious Jackie was now beyond tired and overly ready for bed.  After a nice warm shower, his head hit the pillow and he was out.

Thanks to our friends and our community for continuing to provide love and support through special events. None of us could have predicted the length of time Jackie would be in the hospital and away from home. The love we feel from all of you warms our hearts and fuels our patience.  Thank you so very much.

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Friday, September 19

Wrapping Up The Week

Considering all that Jackie has been through recently, it is amazing he has been able to keep up with his therapy schedule this week.  His daily twelve hour wake time has been filled with mental and physical work outs as well as goals to stay in his chair for 10.5 of the twelve hours,  I’m hoping each week gets easier for Jackie.  Coming off two weeks of solid bed rest into this schedule is not a small feat.  Using a basketball analogy, I would equate this next phase of Jackie’s recovery as a full court press.  Pain and fatigue will just be part of the daily drills.

Jackie was up and ready for Speech by 9am.  Becca picked up Jackie and they worked together on eating breakfast.  Jackie ate a little bit of eggs and oatmeal.  He wasn’t that hungry because his nutritional feeds ran all night and his stomach was still full.  The positive part of the eating experience was that Jackie’s swallowing continues to be strong and he openly communicated when he did not want to eat anymore.  Anyone reading this blog for the first time would think this is trivial, but in actually these small victories are huge! PTL. Jackie’s quick wit also emerged during the session.  A sign that Jackie’s personality is starting to shine through.

After speech. Jackie came back to the room. We typically would go outside for some fresh air, but we ended up talking with our nutritionist and some other staffers which bridged the hour until PT. Like clockwork, Erin came in and took Jackie to the gym.  Jim and I took the time to eat an early lunch and figure out how we were going to accomplish everything we needed to do.  Erin and Jackie soon emerged from the gym and Erin said that Jackie had a good workout! She is going on vacation next week and looks forward to returning and seeing all the progress Jackie will be making while she is gone.

A well deserved nap was next.  There were a lot of unscheduled interruptions, but Jackie managed to take a small nap.  Nana had also arrived with some clean laundry and was able to sit with Jackie while Jim and I either took a quick nap or completed some errands.

When Jackie woke up we said goodbye to the young family we got to know three doors down from Jackie’s room.  We really connected with the family and will miss them.  Due to insurance coverage their family member had to move from Magee to a different facility.  These changes are hard.  We lived through some of them ourselves.  Our plan is to stay in touch and someday have a reunion to celebrate recovery.

Paula stopped by to take Jackie to the gym for his last therapy of the day.  Nana went along to watch.  The session was productive! PTL. It is so comforting to know that Jackie is slowly starting to make progress again. Time and patience will help each session build upon the next.

It was now 3pm and Jackie was to try to stay in his chair until 7pm.  After a trip to the second floor terrace and a little bit of TV, Jackie could only make it until 6pm.  He got in bed and fell asleep right away.  About an hour later we woke him  to get him ready for the night.

Overall it had been an incredibly busy week for Jackie; being released from the hospital and getting back into a challenging therapy routine at Magee.  No one said any of this was going to be easy, and it is not.  With each new week should come new strength and resilience.  The weekend is on tap and therapies are planned for Saturday.  Jim and I will work on ways to keep Jackie positive and mentally strong.

We continue to appreciate your positive thoughts and prayers.  We are sure they are helping to guide Jackie through this journey.

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Thursday, September 18

Small Victories

Jackie slept much better last night. He also tolerated his nutrition well throughout the night.  PTL. When he woke he was more verbal than he has been in a long time.  Right before we helped him get dressed he straightened his right leg, then to our astonishment we swear he purposefully straightened his left leg and crossed it over his right leg.  PTL. We continue to celebrate small victories and look forward to achieving small milestones that will eventually add up to the big milestone of getting Jackie through the last mile of this journey of recovery.

Becca is now seeing Jackie at 9am every day.  She had a cafeteria tray brought up so she could work with him on eating breakfast.  The session went well.  PTL. Jackie’s swallowing function is getting faster and more back to normal.  He even ate half of a bowl of oatmeal.  Becca has approved one meal a day for Jackie to eat from the cafeteria.  It is still a restricted diet but is one step in the direction of increasing meals by mouth and reducing tube feeds.  The nutrition team is following Jackie closely and plans to keep him on a high caloric daily nutrition regimen so that he has enough energy for therapy sessions as well as enough nutrition to put on some pounds.  He has lost quite a bit of weight again and it is time to put it back on.

Part of the new game plan for Jackie includes less naps during the day.  This is a lofty goal since Jackie still seems to be tired from his recent hospital stay.  He will need to pull all of the strength he can muster to achieve this. Since PT was an hour away, we kept Jackie in his chair and went out to the second floor terrace for warm sunshine and fresh air.  We reclined him back and he closed his eyes enjoying the simple comfort of sunshine on his face.  It was a beautiful day.

Erin picked him up next and took him to the gym.  She said he had a great workout.  She used the standing table to help get him as upright as possible for as long as possible.  Slowly but surely he is making his way back.

His new OT schedule allows him to take a nap prior to the session, but today Paula was going to see him early. Once again, we kept him in his chair and let him rest there.  He also had some afternoon meds and a bolus of nutrition that was administered through his peg tube.  Before we knew it, Paula came to the room to take Jackie to the gym.  The main goal of the session today was to take photos of the correct sleeping positions for Jackie.  Since he had so many muscle spasms in the hospital, it is important that when he is repositioned in bed every couple hours overnight,  it is done correctly.  Anything to help reduce muscle tightness or spasms is key.

At last, Jackie was able to take a nap.  As soon as Paula got him back to the room he was unlocking his seat belts.  He didn’t need to say a word, it was obvious he needed a break from his chair and a busy day of therapies.

When he woke up we had just enough time for a quick break on the second floor terrace.  Then it was time for a shower and shave.

Jackie was exhausted.  Getting in bed by 7pm may seem way too early for a 19 year old to turn in for the night, but with his new schedule it can’t come soon enough.

The course that lies ahead for Jackie is long and challenging, but the experienced staff at Magee will help guide Jackie, Jim and I through each mile.  Another new day is ahead with opportunities for small victories.  PTL.

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Wednesday, September 17

Game On

Jackie woke from a somewhat restless night.  Since we have been back at Magee we have been trying to max out Jackie’s nutritional needs through his feeding tube overnight.  Once again we were not successful. Jackie had stomach cramps and the feeds had to be turned off.  We were able to turn them back on very early in the morning but for only a short time.  Hoping to have a better night tonight, as nutritional needs are a huge part of his recovery.  Jackie is starting to eat a little on his own but at this point it is considered pleasure eating and does not have a significant impact on his total calories for the day.  Like before when he was on the feeding tube, the goal is to continually increase what he is eating by mouth and ultimately decrease the tube feeds to nothing.

Jackie went to Becca’s office for speech.  She continues to observe his cognitive vs motor skills during her sessions. Right now it is easier and faster for Jackie to answer questions with his fingers than to respond by voice. It will just take a while for his brain and body to recover and reconnect after this last set of surgeries.  Patience.  We have never been challenged with the need for so much patience in our lives until now.

Speech ran right into PT.  Erin tested Jackie’s endurance for laying on his stomach.  Having the feeding tube in adds a complexity to this exercise, but the therapists know how to handle every situation.  After the session was over Jackie was given lunch via his tube.  It is called a bolus feeding and is given to simulate eating a meal.  It also is packed with calories and nutrients.  This way Jackie can save his energy and put it toward therapy sessions instead of working so hard to eat as much as possible by mouth.

Paula worked with Jackie earlier than normal. She had him doing many things including standing and working on his posture.  Paula had him stand in front of a mirror which makes it easy for him to see what needs to be self corrected.  Speaking of vision, Jackie will be reevaluated to see if his vision has changed since his surgeries.  We anticipate this happening in the next couple days.

A nap was next on the agenda. Grandma and Grandpa were visiting and sat with Jackie while Jim and I met with our entire Magee team. Dr. K led the meeting which included 10+ Magee staffers.  It was the first time in many months that I sat at a large conference table for a meeting.  This used to be something I did all the time at work.  It felt oddly familiar yet totally different, if that makes any sense.  It was time to talk about the new plan for Jackie.   New strategies and goals are in place to help Jackie gain more independence.  Everyone on the team has a role and agreed on next steps. Weekly updates will keep the team on track. I was moved by the teams level of passion and commitment.  It completely reinforced our decision to bring Jackie here. PTL Hopefully Jackie will rise up to the challenge of the new plays that will drive this next phase of his recovery. It’s game day.

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Monday, September 15 – Tuesday, September 16

No Rest For The Weary

Monday morning started with early rounds from the docs.  Jackie’s neurosurgeon team was first.  Dr. E. and team felt Jackie was stable enough to head back to Magee. PTL Now it was up to several team evaluations, insurance approval and our 5th readmission back to Magee. We had a feeling by the time all the evaluations were done we would be returning on Tuesday, but by 4pm on Monday we were heading back to Magee.  It felt so good to be leaving the hospital, it had been a long, hard two weeks for Jackie.

The staff greeted us when we returned to Magee. After going through all the steps to admission and getting meds worked out through Magee’s pharmacy, Jackie finally settled in around 10:30pm.  It was another long day.  The best part was the expression on Jackie’s face when he laid his head on his memory foam pillow.

Tuesday came early.  Just as Jefferson staffers had to do evaluations for discharge, Magee staffers had to do new assessments for admission.  Paula started the day with an ADL session.  Jackie had only been up twice in the two weeks he was in the hospital.  Jim and I sat him on the edge of the bed for just a minute or two the day prior to his final surgery, and the PT, OT team had him sitting on the side of the bed for at least 10 minutes on Monday. Jackie is not holding his head up like he used to before, and his ankles are not currently able to keep his feet in the correct angle for walking.  Between laying flat for many days and then going through days of full body spasms Jackie’s body is tight and in need of a new plan for recovery.  His left side is still impaired but we have seen slight movement in both his left arm and leg post surgery. Very slight movement, but we will take it! PTL

Jackie headed to PT for his evaluation.  Erin agreed the hospital stay set Jackie back but she was also impressed with some of the skills Jackie was still doing well, like his standing balance.  PTL she will start formulating plans to jump-start Jackie’s therapy.  Jackie took a nap immediately after PT.  I was amazed he was able to make it this far.  While he was napping, Jackie received some nutrition through his new peg tube.  When he woke up it was time for speech.

It took a while but Becca was able to get him to say some words.  She also worked on swallowing.  It seems that everything Jackie is doing is delayed.  I’m not sure if that is due to his new meds or if it is a result of just being tired from everything he went through in the hospital.  Time and patience will give us the answers.

After speech Paula came back to work with Jackie on his transfers. After she was done we agreed that it would be best and safer for everyone if we used the lift device when getting Jackie in the shower chair.  All other transfers could be down like before.  As much as this was disappointing, it should only be for a short while and is the best thing to do.Tired out once again, Jackie took another nap.  Then we moved him to the shower chair, and then back to bed.

Jackie made it through the day much better than I had expected.  I think any of us would still be lying in bed or on the couch after a hospital stay similar to Jackie’s.  With each turn the marathon seems to gain miles. TBI is in control of the GPS.  Jackie just needs to stay strong through the bumpy roads and keep focusing on the smooth pavement that will eventually allow him to cross the finish line.

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