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.

Standard

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.

Standard

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.

Standard

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.

Standard

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.

Standard

Tuesday, August 26

Back To Baby Steps

Jackie’s night was fairly peaceful. He could sleep in a little but had to be up for an 8:30am ADL session with Paula. After a little stretching Jackie did a nice job of helping with getting dressed. With his left  side impaired it limits what he can do.  Paula teaches him tricks so that he can help as much as possible.  Paula also continues to educate Jim and I on muscle spasticity and the domino effect it has on literally every muscle group. Stretching helps but the need to find the right medicine for Jackie continues.

After getting dressed Jackie had a late breakfast which took him right up to his PT session. Mark did sitting and standing exercises with Jackie. Other Magee staffers stopped in the gym to check on Jackie during his work out.

Jackie took a nap after PT since he was going to have speech from 1-2pm. Becca was going to evaluate his swallowing again. Becca kept the atmosphere very casual during lunch to simulate what a lunch would be like at 19. This approach worked well. Jackie ate all the chicken salad out of a chicken salad sandwich and also ate Cheez-Its and drank more than he has in a while. PTL. Jim and I took over when the session was over and Jackie had a lite bit of dessert with his meds. Becca stopped by Jackie’s room later and told us Jackie could go back to a ground diet. One step closer to getting back to a regular diet. PTL

Even though Paula had worked with him in the morning she took him to the gym and did a little bit of stretching. Jackie came back to the room and took another nap.

Jackie ate a late dinner and then we watched a little TV with a Cheez-It snack. PTL He was getting tired quickly so we helped him get ready for bed. More IV fluids ran overnight.

Slowly we are beginning to see the return of baby steps in Jackie’s recovery. PTL Prayer, positive thoughts and patience continue to keep us moving forward.

Standard

Monday, August 25

A New Week

Monday is here already as the hospital buzzes with the start of the new week.  Jackie received fluids overnight and was able to sleep in a little.  Sometimes he will say some words before we get him out of bed, but this morning he must have just been tired.  As we normally do, we help him change into his clothes for the day and move him to his wheelchair.  His mood always goes down once he is in his chair.  We try to reassure him that it is only temporary, but I’m not sure if he truly believes it.  He has been in a hospital bed for a very long time with no break.  We were all ready to go home and we never did.  But focusing on these negatives is worthless and a waste of energy.  Today is the start of a new week and each new day can possess possibilities for progress.

Becca is back from vacation and delivered chocolate fudge from the beach which she had promised to Jackie.  She decided to split the session in two, so took Jackie to the sixth floor terrace for the first half hour.  Becca is very good at helping Jackie deal with his TBI by just saying it as it is and letting Jackie say whatever he wants. Although he didn’t speak much she did get him engaged in the session.  The chocolate fudge also helped.

PT was next.  Erin is out all week so Mark, the PT supervisor, is working with Jackie.  We normally go to sessions when Jackie does not have his normal therapist, but we have gotten to know and trust Mark.  He stretched Jackie and also worked on sitting balance playing Pete’s sports game.  This is interesting to Jackie and he knows alot about the topic so it is also a confidence builder.

After PT Jackie was tired so he took a nap.  Becca came back at 1:30 to evaluate his swallowing.  He ate an entire bag of chips and some chicken salad.  PTL  She plans to do another evaluation tomorrow and may be able to change Jackies diet slightly. Since he has a mix of good and not so good days changing him back to a regular diet would be too risky.  After having a little dessert and taking afternoon meds, it was time for OT.  I had mentioned that there are only a handful of people that we feel totally comfortable leaving Jackie with and Paula is one of them.  Jim and I took advantage of the break and walked to Walgreens for some supplies. It was nice to be out in the sunshine, plus Paula has my cell number and could call if she needed us.

When we returned Jackie’s session was just over.  Paula said he was tired for the majority of the session. By this time of day Jackie is running out of steam, even with naps.  Tomorrow she plans to move her session with Jackie to the morning and work on ADLs.

As expected Jackie took a nap and then woke up for a late dinner.  We ran into Chef Ken earlier in the day and asked if he could purée a cheese steak with fried onions for Jackie for dinner.  Even though the eating experience was different, it tasted just as good.

We watched TV for just a couple minutes but it was obvious Jackie was tiring out once again.  After a shave and shower he was in bed for the night. IV fluids were run again as we continue to work with Jackie to drink more liquids.

We continue to make the best out of each day. Jim helps Jackie and I laugh and I rid our world of germs as much as I can which actually makes the boys laugh. I hope you are making the most of your days and laughing as much as you can. I will end today with a Snapple lid real fact: six year olds laugh an average of 300 times a day, adults only laugh 15 to 100 times a day.

Standard