Patience

There are many things said about patience.  To have the patience of Job or that patience is a virtue.  I can tell you Jackie’s marathon to recovery will require more patience than we ever thought we could have.  As I sit beside his bed, I without question am absolutely thankful for the progress he has made for it is truly due to Gods goodness.  At the same time I so want him to wake up, say Hi Mom, and head back home to the way life used to be.  I  am praying that we will get to that day but until then…patience.

Jackie was in his chair twice today.  The second time was much later in the day than we had anticipated but we are glad he was able to get there.  Being in a more vertical position can only aid in his recovery.

He is once again struggling with his nutrition.  We were taking things slow and then ramped up to his optimum level.  He is not keeping up with that level.  We once again are going through the steps to turn off the nutrition and then start back again at lower levels…patience.

Jackie had the speaking valve on for a while today and continues to tolerate it well.  Jim also worked with Jackie moving his legs and arms.  Everything will just take time and of course patience.

One very special moment today was when Lindsay arrived.  Jackie hasn’t seen her or Florent for a week.  His eyes moved as best as they could toward hers and you could sense he had a feeling of peace that she was there.

We will continue to take one day and one week at a time, praying for healing and patience.

As I sit here on your bed, moving up and down-side to side thanks to its usual automated motion, I can’t help but be in complete awe of how far you’ve come.

You’ve laughed today, smiled, said I love you in sign, kissed my hand which made my heart melt completely and tears well up in my eyes, found the laces on the foam football we brought for you and had fantastic form by the way. This is not the Jackie we saw in the first night. You are now much healthier, stronger and alert than anyone thought possible.

You’ve shown that no violent, senseless act will tear us apart as a family and that you will be the one to win the marathon while they are stuck at the back of the crowd coming in last.

No longer will I ever take laughter, small moments, health, walking, running or simple tasks for granted. Every day that goes by is a reminder of how remarkable of a person you are and I just want you to know that today you inspire more people than you will ever know!!

Love does conquer all. You are the proof of that. Nothing can stop us from trying and giving up, ha, that’s not even an option.

To Philly and beyond, you got this and we’re running right beside you.

Big hugs (which I miss so much),
– Sis

Jackie’s night was restful to a point. He slept a little bit for Stephanie and then for Jim. He was active for me from about 4am until 9:00am.   We are going to work on helping him sleep more hours tonight, possibly by playing softer music and keeping the lights low.  Between his blood draws and his meds, the best time for him to be able to sleep is from midnight until 3am and 3:30am until 6am.

Another weekend is upon us.  As I mentioned in previous posts the activity in the hospital slows down.  Since Jackie’s CAT scan was taken late afternoon yesterday, we will now need to wait until Monday to review it with the team.  Hopefully next week we will have a better idea on when Jackie will be moving to Magee. (I think I spelled this incorrectly in previous posts – I’ll just attribute it to sleep deprivation)

This morning when Jackie was getting some meds through his feeding tube he lifted his head higher than I have seen it before.  It is still not that high, but a huge improvement from before.  His eyes are starting to open more as well.

Lindsay and Florent are now here and they brought a football for Jackie.  It is amazing, his hand immediately searched to find the laces.  He is unable to throw it but just the fact that he obviously recognizes that it is a football is wonderful!

He is now in his chair.  We plan to give him a break in bed and then have him sit in the chair later this afternoon.

I hope you can slow down your activities this weekend and take time to enjoy the small things.

Will post later tonight.

Jackie ended up sitting in his chair two different times today.  He seems to really like being out of bed and as long as his heart rate stays at good levels, he can stay sitting.  His neck is starting to get stronger as he can lift it slightly.  We are also coaching him to hold on to the side rails of the bed when the staff turns him.

The Neuro team ordered a CAT scan to check on the fluid in the front left of Jackie’s brain.  Early reads are promising, but we are waiting to hear back from the team for their thoughts on next steps.  Jackie’s transfer to Rehab will need to be coordinated by all of his teams of docs.  Our goal is to get him to McGee as soon as he is able, but only when he is ready in every way.

Jackie’s Nana, Jim’s Mom, is here and I am so glad she was able to see Jackie laugh even if it was only for a second or two. He only did this two times later today. I could get used to seeing this all the time!

One of Jackie’s other ICU nurses is sitting with him for a couple hours.  Jim and I are catching a quick nap and then heading back to the hospital.

As I am almost falling asleep typing this, I will keep it short tonight.  Your positive thoughts and prayers are working.  Thank you!

A  day of realization.

Jackie had a fairly restful night.  Kendall played some calming music for him and he slept a couple hours.  So did Jim and I.  Sleep was good for all of us.

As I was going downstairs this morning to pick up a quick breakfast for Jim and I in the cafeteria, I was listening to conversations of hospital co-workers and was paying closer attention to the responses I was receiving from my morning salutations.  One person just started his day and was already wishing for quitting time, others were complaining about things that seem so absolutely insignificant to us now.  I guess until you live through something like we are, it is normal to complain and wish away your days.  I remember doing that some days.  Now we look forward to every minute celebrating things that don’t even rank on ‘big deal’  lists.

The PT team came in bright and early today.  They decided to get Jackie back up on the gravity table.  It took a little bit to get his heart rate at a good spot, but then he was raised to close to standing position.  Jackie seems to like standing up.  Who wouldn’t after lying in bed for 26 days.  He seemed a little tired today and after one round of item recognition didn’t want to keep participating.  He did hold the marker the correct way and was able to recreate letters that Tara wrote down for him first.

ST was making their rounds and stopped in.  Lenora showed Jackie an app on her iPad that had icons of expressions.  She asked him to select the icon that showed a happy face.  His motor skills still need much refinement so he kept hitting the wrong icons with other parts of his hand as he was trying to get his index finger to the right one. When asked how he felt, he pointed to the worried and confused icons.  I think Jackie is starting to realize and internalize the fact that he has been in the hospital for a while and is trying to sort everything out.  After having some days of laughter, I guess we were due for a day of realization.

Jackie is still making progress in baby steps and has come an incredible way in just the last two weeks.  Based on his injury, his progress can only be explained as a result of prayer. He is doing more now than the docs ever thought he would be doing at this point.

Our Trauma doc stopped in and we reviewed Jackie’s meds and everything we could think of from head to toe. We will really miss her when we eventually head to McGee.

Every minute of every day is such a gift.  I hope that you can find ways to celebrate very small moments in your lives and stop wishing those precious hours away.  Will post again tonight.

Rehab Decision – After touring the two TBI rehab facilities in Philly, we have decided to apply for admission to the Neurorehabilitation Center for Brain Injury at Magee in center city Philly.  There were many reasons why we picked this center, one of them being the Lifetime Follow-up System of Care.  They have a great facility and staff including an Iron Man-like walking apparatus.  They also have additional rehab programs not offered at other facilities.  We can now start the process of getting ready for the next leg of the marathon.

Jackie’s day was busy as usual.  His PT/OT session included assisted sitting on the side of the bed and leg work. He also did other strength training exercises.  Tara got out the paper and marker again today and Jackie made more deliberate strokes on the paper.  Great progress!  He then was moved to the chair for a while before getting back in bed. Last night Jim attempted to transform Jackie’s beige helmet into Flyers colors with a permanent sharpie.  It looks ok, but needs some stickers to complete the updated design.  Can’t wait to hear what Tara and Eric think about the new look.

Even though he did not have ST today, Lenora will be happy to know that he wore his speaking valve the majority of the day and tolerated it well.

Our Trauma doc stopped by and spoke with my Mom and Dad and Jackie’s nurse.  She was happy with his nutritional progress and hopes to get him back up to his goal by tomorrow.

Jackie needed help once again today to get his system moving.  Hopefully his body will not need help tomorrow.

Another one of Jackie’s ICU nurses is going to sit with Jackie for us tonight so we can catch up on sleep and get back to our regular routine tomorrow.

As always, thanks for sending your positive thoughts and prayers our way.  Jackie is making great progress but has some miles to go before getting to the finish line.

Feels so good to laugh.

Late last night Jackie’s Grandma was holding his hand.  She is a retired first grade teacher whose positive outlook on life has allowed her to beat two different cancers and other medical challenges.   She talks to Jackie about all kinds of things, reassuring him that his family is there and tells stories to try to stimulate memories.  At one point Jackie raised his index finger.  She proceeded to hold his finger and sing the song, This Little Light of Mine.  After finishing the song she compared her singing to my ukulele playing and out of nowhere Jackie started laughing with a huge smile on his face.  We all laughed until we cried.  It was a beautiful, heart happy moment!  In Jackie style, an encore was due.  His Grandpa was sitting in a chair fairly close to the bed and he made an adjustment to his hearing aid that made a loud high frequency noise.  Jackie started laughing again.  PTL

The rest of his night went pretty well.  There were several consecutive hours early this morning where he did not stop moving his hands.  I know I said this before, but I truly sense that my Jackie is at some level mentally there, he is just trapped in a body that is going to take a while to work itself back to basic functions.

We continue to slowly increase Jackie’s nutrition through his feeding tube.  We have been here before and are taking it very slow to avoid Jackie getting sick again.

For the first time in 25 days, Jim and I are more than 3 minutes away from him.  We are on the way to tour two accredited TBI (Traumatic Brain Injury) Rehab centers in the Philly area.  We have scheduled the tours back to back so we can return to Jackie as soon as possible.  We thought about only one of us going, but this is a big decision and we felt it was best to make it together.  Jackie has one on one nursing today as well as ongoing story telling from Grandma and Grandpa.  Can’t wait until we get back.

Jackie is scheduled for PT/OT today.  ST will resume tomorrow.

Two cool things I wanted to share. Jackie’s friend Sean and his Dad traveled to spring training in FLorida. Yesterday they brought Jackie a sign that had signatures from many of the Phillies. We also received an email from the Flyers with a recorded message of Wayne Simmonds by his locker wishing Jackie a speedy recovery. Jim played it for Jackie last night and he gave the thumbs up to view it a second time. Thanks to everyone who made these things happen!

I’ll have another post tonight with details on the rehab visits and Jackie’s day.  Wanted to send a special thank you to all of our family, who travel back and forth regularly to be there for Jackie and us.  We are blessed.

Another busy day including baby steps to celebrate!

Tara and Eric decided to work with Jackie on the gravity table.  He was able to stay in the upright position longer than yesterday.  They worked on his neck strength and also tested him on item recognition.  Tara held two items up from within the room and asked Jackie to pick the one she wanted him to give to Eric.  She also held out a marker and told him to let her know when she said its correct color.  When she said orange, he grabbed the marker and tried to take the top off, so she let him scribble on some paper.  It was not legible but a wonderful baby step forward.

Our favorite Trauma doc told us while Jackie was in the ICU that many coma patients wake up swearing and the Mom’s are mortified.  She said she could not wait for the day for Jackie to swear at her.  Well….Jackie still can’t speak, but when he was in the upright position on the gravity table Jim told him that his doc was here to visit. He immediately and purposefully raised a certain finger and then for the very first time tried to laugh.  Whether he did this on purpose or whether it was part of the waking up process we didn’t care.  He made everyone laugh including himself and it felt good!  All the excitement was a little too much stimulation and his heart rate elevated to the point where he was lowered and put back in bed.

Lenora came back and did exercises using the speaking valve on Jackie’s trach.  He coughed and resisted at first, but is slowly getting used to it.  We did not get many sounds out of him today.  She did; however, get Jackie to open his mouth a little bit.  She was even able to brush the front portion of his tongue.  She used different techniques to make his tongue move.  Talk about taking things for granted.  Hopefully more sessions will help Jackie move his tongue better and swallow. All big steps in the right direction.

Jackie had to suffer through a couple different attempts to get his system to move and the final one worked.  Hoping this will be the last time we have to kick start the digestive track.

His nutrition started up again at a very slow rate.  We are praying that his body processes it correctly this time.

It is said that God doesn’t give you things you can’t handle.  I’m not sure why Jackie was the one to suffer the most injuries that night or why it seems like there are more steps back than forward sometimes, but I do know we are doing the best we can and digging deep for the strength to get through it.  One thing is for certain, we have never met so many genuinely caring and giving people ever.  Thanks to all of you for touching our lives with your love.

We are celebrating a night without Jackie getting sick.  He rested comfortably despite the fact that we restarted all of his meds that are administered through his feeding tube. His heart rate is dropping to more normal levels and his blood pressure medicine has been reduced.

The Neuro team will be up to make sure his neuro function and swelling is still ok despite these changes in vitals.  We also plan to speak with the Trauma doc.

Jackie is still having issues with getting his system going.  We are continuing meds and other measures to help him.

PT is planning to work with Jackie early this afternoon.  Lenora, ST, came into the room and gave us some laminated sheets that will help us try to communicate better with Jackie until he learns to talk.  She also wrote small word commands to see if he could read and follow them.  The toughest one said – Hold out 4 fingers- he did!  She is planning to come back later this afternoon to keep working with his speaking valve and also mouth movement.  To date he only opens his mouth to yawn.  The staff has only been able to access his teeth from the front since he keeps his mouth closed.

This morning he got his second shower.  They moved him by board to the PVC rolling table in order to transport him.  They said he seemed to enjoy the warm water.  He actually for the first time had small goose bumps.  He was always warm up until now.

Today is day 24.  It seems like our Jackie is in there even though his body, his expressions and his eyes are not really showing that.  This is where we realize that the rehab road is long, but we are thankful for our blessings every day as we have this chance to help him emerge from the fog. We love you so much Jackie and are awed by your strength.

Will post again tonight.

The PT session went well.  Jackie’s heart rate drove the angle and amount of time he was in a vertical position.  They also had Jackie do some exercises to strengthen his neck. This session tired Jackie out so instead of moving him into the chair for a while, he went back in bed to rest.

The Trauma team came by and we discussed Jackie’s previous night with them.  Our doc reviewed all of Jackie’s meds and made recommendations to alter them.  We will now be spacing out Jackie’s meds throughout the day so he is not getting a huge cocktail of meds all at once in the morning through his feeding tube.  The X-ray team came up to take another picture. Our doc was able to review the results right away and it appears that his system is starting to improve.  We are holding off on his nutrition tonight.  Based on how the night goes, he may get a CAT scan tomorrow.  We are praying for a good night and the start-up of his nutrition.  We plan to consult with the Trauma Team again tomorrow.  Even though Jackie is technically staying in a separate hospital within the hospital, it is such a huge positive that we are able to still follow up and consult with his docs from the Geisinger side.

Next up – Speech Therapy.  It was time to try the speaking valve on his smaller trach for the first time.  It will take a while for Jackie to get used to the different sensation that the valve creates when it is on.  Lenora places it on his trach loosely so when he coughs it automatically comes off.  This process is a good transition toward the goal of leaving it on for longer periods of time.  Jackie did a better job at producing some sounds.  He is starting to understand it is necessary to take a deep breath first and then force the air up out of his mouth to make the sound.  Yesterday Lenora had Jackie take a brief look at an alphabet chart.  Today we spent more time reviewing it.  Lenora first positioned the laminated chart in a way that we thought Jackie could see it.  Then she asked him to point to different letters.  This is not only an exercise for his brain function but also for his motor skills.  His right side seems to be moving a little bit better than his left side.  Jackie was able to slowly move his index finger on his right hand to the letters called out.  She then asked if he could spell HI and No.  The letters in these words are side by side on the chart.  We were overjoyed when Jackie pointed to the letters.  PTL

Jackie still has a long road ahead but we are making tremendous baby steps in the right direction!  As always thanks for sending your positive thoughts and prayers to Jackie.