Wednesday, September 3 – Thursday, September 4

Recovery Leads To More Surgery

Jackie’s recovery continued on Wednesday, but things were moving slow.  Jackie was still not talking and he was experiencing the discomfort of swelling and pain. He was able to eat some ice chips in the afternoon but struggled with even just a few bites of applesauce in the evening.  He hadn’t laughed since the surgery either which is something Jackie has always done throughout all of his recovery.  I didn’t blame him. He just got through major surgery.  At one point we thought he was feeling better, but that did not last long.  Wednesday night was a little more peaceful than the night before, but he still only had short periods of sleep here and there.

It was an early morning again.  Jackie was scheduled for a CAT scan Thursday morning at 4am.  We were hopeful the results would show the progress we were expecting.  On the contrary, within a couple hours of reading the scan, Jackie was back in surgery.  To say the least, we were devastated.  I had been telling Jackie that he had finally made it through all of his surgeries, but that was not the case.  Need I say it again, TBI causes havoc all the time.  There are no easy answers or plans that are sure wins when it comes to TBI.

Jackie came back to the room around 2:00pm after his second surgery in two days.  The docs will be running tests and watching him closely over the next couple of days.  We continue to live day by day guided by prayers, positive thoughts and patience.  Sometimes, ok most times lately, it is not easy.  But staying strong for Jackie is a must.  Jackie just needs a couple baby steps to get back on track.

Near the end of the day we were thrilled to have a visit from Dr.K from Magee. He stopped in to see Jackie on his way home from work.  It was great to see him and Jackie gave him the only thumbs up of the night.  PTL

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Monday, September 1 – Tuesday, September 2

Day Before and Surgery Update

It is so hard to believe it is September.  Jackie has been in the hospital straight through the back half of winter, all of spring and the entire summer.  It is a very long period of time comprised of many missed memories with friends and family.  I spoke with a Mom today who lost her son two days after he was assaulted.  She made me realize that there are always people suffering way more than yourself. It also made me realize that God has given Jackie a chance at recovery and we will continue to do everything we can to give him the best chance possible.  Tuesdays surgery will be yet another mile marker in the marathon.

Even though Monday was a holiday, Jackie was scheduled for three therapy sessions.  His first session started at 8am and was an ADL session with an OT therapist.  It was good timing because Jackie woke up with bad muscle spasms.  Nikki did some stretching exercises in bed and that relieved some of Jackie’s pain.  She then helped him get dressed and start his breakfast.  Jim and I took over when the session had ended.  After breakfast we went out to the second floor terrace for some sunshine. We reclined Jackie and he enjoyed feeling the warmth of the air as he closed his eyes and fell asleep.  We woke him after a short while and went up his room.  Erin was back and Jackie’s PT session was next.  Not long after Jackie went to the gym, Lindsay and Florent arrived.  We had a chance to catch up while Jackie finished his session.

After the session, Florent said goodbye and headed home.  Lindsay was spending the night and taking the train home on Tuesday night post surgery.  It was so wonderful for all of us to have Lindsay here.  Jackie especially loves her company.  The rest of Monday followed the same routine of naps and meals.  We were heading to the hospital at 4am Tuesday morning so we wanted to get Jackie settled into bed as soon as we could.  Once again he was struggling with muscle spasms, but the warm shower helped to calm them.  We were so glad we were all together as we were facing a big day on Tuesday.

The transportation company arrived at Magee on time and allowed all three of us to ride in the ambulance with Jackie.  This does not happen very often and we were thrilled to all be able to go to the hospital together.  We were the first to arrive in the pre-op area, this was short lived as within an hour the room was buzzing.  After a little over an hour here, we moved to the surgical floor where an IV was placed and we met with the anesthesia team as well as our neurosurgeon.  We had made it to the surgery and were anxiously ready for this next step to Jackie’s recovery.

If you have ever waited for a loved one while they are in surgery, you know that minutes seem like hours.  Jefferson has a large surgical waiting room and a notification screen similar to airports that gives you the progress of the patients.  You can track them from the OR through to recovery.  They also call the families with updates along the way.  We finally got the call that surgery was over. Our surgeon called us himself to let us know the surgery went well.  PTL. We took turns visiting him in recovery.  We wanted Lindsay to be able to visit as much as she could.  Jackie held her hand and wouldn’t let go.  The fact that she was there was a huge comfort to Jackie both prior to and after surgery.  It was getting close to the time Lindsay had to leave and Jackie was sleeping, fortunately the nurse had to wake him up so Lindsay could say goodbye.  It appeared that he almost started to cry and when she gave him the sign for I love you, he signed back. PTL.

We all shed tears.  Mostly tears of relief but also tears that Jackie continues to have to go through tough times to get to the finish line.  Grandma, Grandpa and Nana also took the train home.  The remainder of the night was restless for Jackie.  We are hoping Wednesday will be a day of healing.

I know so many of you said extra prayers yesterday and they worked.  Jackie’s surgery was a success.  We now go hour by hour and day by day as we set the new recovery plan that will hopefully get us home soon.

Thank you for your love and support.

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Sunday, August 31

Anticipation And Preparation

After a busy, fun Saturday Jim, Jackie and I planned for a laid back day. Jackie’s surgery is scheduled for early Tuesday morning and we are in the process of mentally and physically preparing for this next big step of his recovery.

Jackie slept in and then ate a late breakfast.  His swallowing function seems to be improving little by little with each passing day.  PTL. We decided to go outside for a little fresh air.  As we got off the second floor elevator we were surprised to see that no one was sitting outside. We ventured out and realized the heat and humidity was high.  We stayed out long enough to get some warm sunshine and then headed back inside. Jackie said he was tired so he rested in bed.   He didn’t sleep solidly like he usually does, but it still was a good break from sitting in his chair.

After lunch Jackie had recreational therapy.  We didn’t have it for a while since Jackie had been so lethargic.  It was good for him to be back working with Jenna again.  Jenna always gives Jackie two choices of what he can do and today he picked the Wii.  The gaming room that we used to visit on the fifth floor is being repurposed so we went to the gym and used a large new, mobile TV. Jackie played a couple different games.  We had to help him several times.  He was such a good gamer, I truly believe his eyesight is causing his challenges. Even though he must be extremely frustrated, he keeps plugging away.  I can’t even imagine what he must be feeling.  To lose function on your entire left side and also have impaired vision would make any of us non-motivated and sad.  Even though I’m sure he is feeling this same way, he keeps getting up every day and pushing through.  Sure makes a sinus headache or bad allergies seem trivial.

We came back to the room and Jackie got in bed for another nap.  This time he was able to get some sleep.  He woke up and had some dinner.  Jim and I ordered take out from the restaurant that has the frozen banana deserts and we all had one together.  We went to the dining room next door and looked out the large bay window at the rain.  Since we are in center city there always seems to be something going on. This weekend the Made in America concert has filled the streets with many people.  It is good for Jackie to see what is happening outside of the hospital!

Tonight was a shave and shower night.  After watching a little bit of TV he fell asleep.  Earlier in the day we read some cards to Jackie.  It is always an emotional experience but we feel it will help with his recovery.  When we were done reading through some of the cards we talked about his injury and the fact that it will just take time to get better.  We also have been talking about his surgery.  He is a young adult and needs to know everything that relates to his body from meds to surgeries.  I think he appreciates the honesty and I hope it helps him understand and learn more about TBI.

Thank you for keeping Jackie in your prayers and positive thoughts.

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Saturday, August 30

A Feeling Of Normalcy

Since Friday night was not very restful we let Jackie sleep in.  He only had one  therapy session today and we were hoping to push it back to later in the day if possible.  Jackie ate a good breakfast and was looking forward to seeing Lindsay and Florent.  We were planning to have a surprise birthday celebration for Lindsay.  Florent’s parents were also stopping by as well as Nana and John.  I was able to book a conference room and Magee staffers helped us get some birthday balloons, plates, napkins and even picked up some gluten free goodies from a bakery.  Florent’s Mom made a cake and also brought some other goodies including some sparkling cider.  I blocked the conference room for a couple hours not knowing if or when we would all be able to gather at the same time.

Lindsay and Florent arrived after Jackie was finished with breakfast.  It was so wonderful to see them and get my hugs. After a little bit of catching up, Jackie took a nap listening to the details of the recent trip Lindsay and Florent made to see Florent’s sister and her family.  By the time he awoke everyone else had also arrived so we decided to seize the moment and have our impromptu party.  We all sat down around the conference table and sang happy birthday.  To our surprise, Jackie sang with us.  PTL He was sitting right beside Lindsay and she could hear every word.   When we were almost done singing Jackie began to cry.  Lindsay reached over and they embraced and cried together. It started a chain reaction of tears.  What a blessing that we were all together and Jackie was actually singing to his sister.  It was a beautiful moment and was without a doubt the best birthday present Lindsay received.

The party was short but sweet.  We took Jackie back to the room for a late lunch and afternoon meds.  Everyone was waiting for us on the second floor terrace.  Jim, Jackie and I joined them and said some goodbyes.  Lindsay and Florent were able to stay a little longer.  We went back to the room and continued to get caught up on everything that was happening in their lives.  Jackie got in bed for another nap and enjoyed listening to the stories being shared. It was not a hard goodbye because Lindsay and Florent will be back on Monday.

A late dinner followed and then it was already time to help get Jackie ready for bed.  It had been a long but wonderful day!  PTL The events of the day had given Jackie a feeling of normalcy and a taste of the life he used to have. I hope deep down inside he realizes many more of these moments will fill his life once again.  Prayer, positive thoughts and patience will get us there.

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Friday, August 29

TGIF

The start of a holiday weekend.  The schools in the Philly area don’t start back until after Labor Day so many of the Magee staffers are taking a long weekend.  Jackie’s schedule changed slightly today for that reason.  His first therapy was a mix of PT and OT and was at 10:00am in the gym.  Jackie was stretched and Dr. K stopped by and participated in the session.  He served as a focal point and target when Jackie was working on balance while releasing balloons.

Becca pushed back speech until 1pm.  This allowed Jackie to take a nap prior to the session.  She decided to have Jackie try eating a cheese steak. It was not the one from the cheese steak challenge.  That will have to wait until later.  This cheese steak was from Magee’s kitchen.  Jackie didn’t eat any bread but ate almost the entire amount of meat. PTL Even though he did well he will stay on the ground diet for now.

After lunch we worked with the nurse manager who used to be an ICU pediatric nurse at CHOP, Childrens Hospital of Philadelphia. He was able to get a new IV line started.  PTL

OT was next.  Natalie took Jackie up to the sixth floor and worked on his head and neck control as well as his eating posture.  He snacked on a Magnum chocolate covered ice cream bar that was broken up and put in a bowel. The session was successful and it was now time for another nap.

Following the pattern we have been in for the last couple days, Jackie ate a late dinner and then snacked on a whipped banana frozen dessert on the sixth floor terrace.  Jackie’s muscle spasms started kicking in so we went back down to his room and he took a warm shower.  The IV fluids were started and Jackie went to sleep.  The night was plagued with IV issues that woke Jackie almost every hour.  The fluids were able to run all night, but Jackie unfortunately did not get much rest.

Thanks for keeping Jackie in your positive thoughts and prayers. We are looking forward to a relaxing weekend full of rest. Enjoy your weekend, be safe and appreciate everything.

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Thursday, August 28

Staying On Course

Jackie had one of the best nights sleep he has had in a while.  I’m not sure if it was the absence of the IV or if it was the arm brace that is helping to reduce the muscle spasms, whatever it was helped him sleep soundly.  PTL We are planning to go one more night without fluids and then will restart them on Friday and run them through Monday.  Jackie is starting to consume more fluids on his own, but still has a way to go to be where he needs to be.

Even though he slept well, Jackie seemed to be approaching the day sluggishly. After a little coaxing he was able to eat a good portion of his breakfast and take his morning meds.  Becca came in the room and helped him finish.  After he was done they went to the sixth floor and played some black jack.  It was beautiful out and the fresh air was good for Jackie.  He was not as verbal as yesterday but did use hand signals during the game. We are not sure why he is still not that verbal.  We do know his ability to focus is impaired and that certainly has something to do with it.

After speech Jackie moved on to PT.  The session was split into two halves, with the second pairing up with rec therapy.  Jackie worked on his balance and trunk control while playing the Wii.  We borrowed a game from the rec therapy department that will be easier for Jackie to play.  Gaming was something he loved to do, so we are hoping successful Wii sessions will help spark his interest and help strengthen his ability to focus.  Plus it will be something different and fun for us to do together.

A nap was next on the agenda.  Jackie fell asleep fairly quickly and woke up for a late lunch.  We got the OK to heat up some Spaghettios, and Jackie seemed to enjoy them.  He didn’t eat all of them, but at least it was different from the food he has grown accustomed to getting on his tray at mealtimes.  He finished very close to when his OT session was to start.  Natalie came to get him and we all went to the gym.  We had scheduled a haircut and worked it in with his session so that  he could work on sitting balance and head and neck strength all at the same time. I like his hair longer, but getting a buzz cut is something Jackie likes and it does make him look more like himself.  After the cut, he continued to work on sitting and standing balance.  Jackie’s eyesight continues to be a challenge.  The horizontal  and vertical prisms on his glasses are meant to help the brain recognize the left eye.  By doing this his vision is most likely blurred.  He does not say much about it. He still cannot always find the bowl or plate with his spoon and his eyes occasionally shift back and forth for an attempt at stabilization.  We pray his upcoming surgery will help with many things including his vision.

Jackie chose to nap immediately after OT.  A late dinner followed.  We watched a little of the last pre-season Eagles game while Jackie enjoyed some water ice.  Then it was  time for bed and evening meds.

Day by day Jackie continues to stay on course and tries his best to work through the physical and mental hurdles that are always in his path.  TBI continues to be the arch enemy, but I know Jackie will continue to muster the strength needed to beat it.  Time is on his side and prayer, positive thoughts and patience will be his tools to win.

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Wednesday, August 27

Mixed Emotions

We started the day with the usual routines.  Getting dressed, talking with Dr. K and eating breakfast.  One thing was different.  We had a special phone call to make.  It was Lindsay’s birthday and we wanted to sing Happy Birthday to her like we do every year.  We put the phone on speaker and began to sing.  It was mostly Jim and I, Jackie had a big smile on his face.  As we started talking with one another Jackie was getting sad.  We held the phone up to his ear so he could speak directly to Lindsay and he started to cry.  I’m not sure what all was going through his mind.  I do know he loves Lindsay and misses the way things used to be.  We tried to end on a happy note, but Jackie was still sad.  I texted Lindsay later to let her know he was ok and the fact that he is showing emotion is a good thing.  I am so blessed our kids love each other and know that someday Jackie will be back to texting her daily and taking road trips to visit her and Florent.

Breakfast led right into speech.  Becca gave Jackie the choice of having his session outside or in her office.  He chose outside.  Yesterday at lunch Becca had mentioned to Jackie that Katy Perry’s song, Roar, reminded her of him.  Later last night she sent me a link to a YouTube of a music video to the same song done by a Children’s Hospital.  It was very moving and so cool that the hospital did something like this with the kids.  Becca showed it to Jackie in her session with him today.  He cried.  She stopped the video and asked if he wanted to watch the rest, he said he did.  When she restarted it she was making the hand motions that they were doing in the video, Jackie started doing them as well.  She asked if he knew he was going to get better and he gave her a thumbs up.  PTL She asked if he was ready for his upcoming surgery and he also replied with a thumbs up.  As the session continued Becca played the theme to Rocky.  Once again tears flowed but by the end of the song he was doing the Rocky high fist pumps. PTL Becca was making progress and helping Jackie work through some of his emotions.

As soon as they returned to Jackie’s room it was time for PT.  Jackie was starting to get tired but pushed through as much as he could.  By the end of the session Mark and another therapist were helping him walk.  It wasn’t the best he has done, but he was making an effort and trying.

When he came back to the room he was exhausted both mentally and physically.  He took a nap and then woke up for a late lunch.  He ate well but near the end was tiring already.  OT was next and Natalie was covering for Paula.  Lately it has been very difficult to have a good session at this time due to his lethargy.  Natalie tried her best to engage Jackie, but he had a hard time pushing through.  He was definitely showing signs of being tired but was able to complete the session.  After a short  visit with Grandma and Grandpa he took another nap. Dinner, a short visit to the second floor terrace and then a shower rounded out the evening.

Today was a mixed bag of emotions for Jackie.  A sadness for how things used to be and determination to get better.  I was looking online for a quote that would eloquently sum up what I think Jackie is feeling. I didn’t find what I was looking for but did stumble upon this on Pinterest – ‘Never underestimate the therapeutic power of driving and listening to very loud music.’ Although I always told Jackie not to do this, I’m sure if he could, he would run to his car, back out of the driveway and do this exact thing.  I know in my heart someday he will do that again, until then we will help guide him through the miles of this journey and someday we will look back with our own bag of mixed emotions.

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