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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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.

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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.

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Saturday, August 23 – Sunday, August 24

Weekend Update

Just like the moon waxes and wanes so do symptoms of TBI recovery.  Saturday Jackie continued on an upswing.  He ate a good breakfast and then had a very good speech session.  He licked a lollipop in order to exercise his tongue and also had many verbal responses to a fun speech game.  The answers to this game are not always obvious and I think Jackie likes the challenge of answering them.

He went right to PT and had another good session.  His muscles were stretched and he worked on his standing and sitting balance.  He was now ready for a nap and slept well.  He got up, had lunch and headed to OT.  Once again the session was productive.  More muscle groups were stretched and his sitting endurance was tested as he leaned on a back board while playing me in Connect Four.  I lost the best of a three game series.  Jim and the therapist were helping Jackie with his moves.  In most cases it was not his strategy but his vision that was causing issues and needed correction.

Since he ate a light lunch, he ate again after OT.  Sean and his Mom had brought up our Wii system from home when they visited last week.  Jim had hooked it up and together he and Jackie played a couple of games.  Jackie used to enjoy playing X-Box but because you need two hands to play it is not an option right now.  To be honest, even playing Wii is a little challenging, but Jackie doesn’t seem to mind.  A nap and dinner followed as well as a shower.  It had been another good day. PTL

Sunday seemed sluggish.  Jackie went back to being mostly non-verbal and tired.  We had the day off from therapies and that was good.  I think Jackie needed a day to just rest and not be tied to any schedules.  We mixed up the day with meals, naps and small trips to the second floor terrace.  Jackie also tried playing Wii again, but was not very successful.  We will keep trying.

Both nights the IV held and he was able to get fluids.  PTL We are still working on trying to get him to eat as much high calorie food as we can and drink as much as he can.  He has lost some weight, but I feel we should be able to start maintaining where we are for now.

We are so grateful for our wonderful friends and family.  The marathon continues and our stops along the way always seem to be rejuvenated by their love and support.  The finish line will be crossed, we just need to continue to stay positive and be patient.

Jim has started collecting inspirational quotes that he has found online.  One of them stuck out to me and I wanted to end my post with it today.  It reads, “You will face your greatest opposition when you are closest to your biggest miracle.” ― Shannon L. Alder.  PTL

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Friday, August 22

Rallying Back

Jackie woke this morning and seemed a little bit better.  He was more verbal and awake. PTL I’m sure the fluids that ran overnight made him have more energy.  He ate a good breakfast and was almost ready for Aimee when she arrived.  She had ordered chicken salad and wanted to test Jackie’s swallowing again. Jim and I left the room for a couple minutes.  We returned at 10:30 to meet one of the residents we have come to know well.  He is a wonderful young man with a huge heart.  He is extremely busy and even though he has moved on to a new assignment, stops in to check on Jackie.  He insisted Jim and I leave the hospital together for thirty minutes and he would be there to handle anything that came up.  We couldn’t say no.  There are only a handful of people that we feel comfortable leaving Jackie with, he is one of them.  We hoofed it to Reading Terminal, an indoor food market on steroids that puts our home town farmers market to shame.  We bought a couple of food items, including some things Jackie could eat and headed back to Magee.  It was a quick, fun excursion for the two of us – thanks Doc.

While Jackie was in PT we met with one the dietitians. She is right out of school but very good.  We reviewed the trackers I have been completing of Jackie’s daily food and fluid intake. We discussed how we could increase his calorie count.  She also checked on a new supplement that just came in and made sure Jackie could try it at lunch.  It was a mint chocolate parfait packed with nutrients and calories and Jackie liked it! As we were wrapping up, Erin brought Jackie back to the room. With help, Jackie walked and even played corn hole.  He beat Pete, the student whose last day was today.  Erin said he had a very good session and was also more verbal than yesterday.  PTL Jackie was rallying back!

We got him in bed for a nap and then he ate a late  lunch.  OT was next.  Jackie was not as active for Paula. I think he was still tired.  Paula stretched several muscle groups and worked on patterns and other things with Jackie. When they got back we put Jackie in for another nap.

Dinner was next.  We learned of a new restaurant from Aimee that delivers food to Magee.  It is called Fuel and has a very healthy menu.  They have a dessert called a banana whip. It is basically frozen whipped bananas.  You can also add strawberries or chocolate.  We ordered some food last night and Jackie ate half of the chocolate banana whip!  After dinner we watched a little TV and then Jackie went to bed.  The IV replenished some of his fluids overnight.

As you know from reading the blog, we live day to day.  Today Jackie found inner strength to start rallying back.  We don’t know what tomorrow holds but for now we will celebrate the day and all of the positive progress that was made.

I haven’t mentioned it in a while but please know we thank you for all of your positive thoughts and prayers.

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