Trying To Get Back On Track

After a very long night in the ER we returned to Magee.  We spoke with several teams and after some testing felt Jackie was stable enough to return to rehab.  We were glad we did not have to be admitted.

Needless to say Jackie was exhausted all day.  We let him sleep in and the therapists worked with us to rearrange his schedule. We were out of routine all day which makes it hard to fit everything in.  Jackie managed to get through his therapy sessions and ate and slept when he could.  We did not get a shower due to his lethargy. It just would not be safe.

We got him into bed early and he fell asleep right away.  He is getting more IV fluids to ensure he stays hydrated.  We are hoping that each day gives Jackie more strength.

Lindsay and Florent are planning to visit this weekend.  I’m sure this visit will give Jackie the boost he needs. I can’t wait for a hug from my sweet pea.

Enjoy your day, appreciate everything and laugh during those times you may want to cry.

As always thanks for your continued positive thoughts and prayers.

Revolving Door From Magee To Jeff

On Monday, testing and conversations continued with different specialty teams at Thomas Jefferson Hospital.  After reviewing all of Jackie’s symptoms with the teams and ruling things out, GI issues seemed to be the catalyst.

Jackie was rehydrated with continuous IV fluids and was released to come back to Magee Tuesday night.  PTL

Jackie still seemed a little off on Wednesday.  The therapists were in agreement.  The speech team at Jefferson moved him back to a restricted diet which he began to follow at Magee.

Jackie went to all of his therapy sessions and had dinner.  We had some concerns after dinner as Jackie once again did not seem right.  We worked with Magee staff and decided to have him seen once again at Thomas Jefferson.  We are currently waiting to see if Jackie will be admitted for further testing.

One of the reasons we selected Magee was its proximity to excellent hospitals.  I don’t think we ever imagined how much that reason would come into play.

Day by day Jackie continues to tough it out.  At some point that revolving door will lead to home and that will be a day to celebrate.

Thanks for your continued positive thoughts, prayers and support.

Back At Jeff

Jackie was admitted to Thomas Jefferson Hospital late Saturday night for further testing. Several teams have been working with us as we begin the process of identifying the catalyst for his symptoms.

We are starting to rule things out and are hopefully getting closer to getting Jackie back on track.  Our neurosurgeon has been working with us and will help us connect with other teams if necessary so nothing holds up his upcoming surgery.

Thanks for your continued positive thoughts and prayers.  The course to TBI recovery is long and unpredictable.  Even the slightest system imbalance is magnified when the brain has been injured.  Now that the weekend is over and regular hospital staff is back, we look forward to a week full of answers and renewed strength for Jackie.

Checking Things Out

Jackie woke up and was very sluggish.  He had a hard time eating breakfast, in fact Amy who was filling in for Becca had to help us coach Jackie through getting his meds down.  He had IV fluids running through the night.

He went to PT after speech with Erin.  Jackie was not very responsive but went through the paces and worked with Erin to get through the session.  He got back to the room around lunchtime and we decided to just try to get some food down since he ate such a light breakfast.  Communicating has been increasingly difficult the last day or so and even the therapists were reverting back to hand signals to get a response from Jackie.

He ate a light lunch and had his afternoon meds.  It was time for a rest prior to OT. He fell asleep right away.  The hour went quickly and it was time to wake him up for his session with Paula.  He seemed to be a little better when he woke up.  Paula took him to the gym and I headed over to the hotel to pack some things up and send them home with my sister and brother-in-law.  Grandma and grandpa also helped.

When we got back Jackie was back from OT and got sick.  We put him in bed and he rested a while.  We were able to get him to eat a little bit of dinner.  He went to bed with IV fluids running throughout the night.

The night was fairly peaceful but when he awoke we knew it was time to get him checked out.  We are getting tests done and will hopefully be able to get to the bottom of what is causing his issues.  TBI strikes again.

Working Through The Hurdles

We let Jackie sleep in as it had been a late night last night with the normal nurse checks mixed in. Dr K’s resident came into the room and we discussed and agreed on the plan for the day.  Jackie needed some fluids so an IV was put in.  He had  meds for nausea and then a limited breakfast.  We decided to permanently change our time for speech to 10am since we have been chronically late for weeks.  Becca came into the room and had her session with Jackie here.

Erin was back and came to the room to pick up Jackie as soon as speech was over.  The IV and the fact that Jackie was very tired dictated the type of activity that could be done so the focus was on stretching.

We continued to give Jackie meds for his system throughout the day.  He had a late, light lunch and then Paula picked him up for OT.  With the IV still in place, Paula also focused on stretching.  Transfers were worked on in both PT and OT.

Jackie ate a small dinner and then we stayed in the room and watched some TV.  After a shower Jackie had evening meds and went to bed.  The IV will run overnight to help replenish fluids.  We are hoping to get back to a more normal schedule tomorrow.

Be kind to your brain, too often we forget how critical its function is to our entire body.  Going through a TBI sends that message loud and clear.  When we sit on the second floor terrace we can see Race St.  We see people of all ages riding bicycles weaving between cars, we see kids on skateboards and we see parents pushing strollers without keeping a close eye on their precious cargo.  Many of these people are not wearing helmets.  There are so many times I wish I could just yell down to them and have them stop and take a tour of the fourth floor at Magee.  It only takes a second to change your life forever.  In some cases you can make a choice to help prevent serious injury to the brain.  I just do not understand why so many do not make that choice.

Almost six months have gone by and you are still in the fight for your life, struggling every day to complete tasks we all take for granted and do naturally. It has not become easier to adjust to life without you here in the present – telling stories and making visits with fun photos from a summer full of friends, laughter and love. It has been very hard to stay afloat in all of the emotions and this is only from your sister’s side of things who isn’t living within it the way you are.

Everyone says it will get better, it will get easier, things will go back to normal and I want to believe that is true. But the truth is nothing will ever be the same. Everything changed. Everything is different and this, right now, is our new normal. Yes, you will get better and you will keep getting stronger and stronger to the point of walking and hopefully running again. But pretending like this situation doesn’t suck and that it’s easy or on the straight track to being back to the way it was would just be foolish.

You are in a rut right now and trying to dig your car out of the pothole that has come up from nowhere. Just keep thinking about the goal of being home. Think of how nice it will be to sleep in your own bed and hold on to that moment in time. That will get you where you need to go for now and we will help you along the rest of the way. I know you will get better and that no matter how much of you gets better, or how long it takes to get out of this spot, you will never go a day without being loved. You are a hero to more people than you know and keep so many of us from taking for granted this beautiful life.

Keep fighting and we’ll keep pushing through with you. It doesn’t matter that everything is different because you are still here with us. You made it here, to this point. And Jackie, my goodness that is one hell of an accomplishment and something you should be proud of.

Love you lots,
Sis

Hurdles

Jackie fell asleep later than normal and had to get up early to be transported to his CAT scan and doctors appointment.  The team felt it was best to transport him via stretcher.  We were not sure how long we were going to be gone so they thought he may be more comfortable this way.  We have transported him both ways and based on the bad condition of  inner city Philly streets, transportation via stretcher makes it a less bumpy ride.  The transportation company was running 45 minutes late, but we managed to get the CAT scan done first and then go to another building a couple blocks away for the doc appointment.  Jackie got sick after the CAT scan.  His neurosurgeon thought Jackie looked stable, PTL, and we are to just hold the course until the surgery.  He is hopeful as we are, that Jackie’s left side will re-engage post surgery.  Time will tell.

On the way back to Magee Jackie got sick again.  We got him up to his room and got him in bed to rest.  More measures were being taken to get his system back on track.  We were counting on them as Jackie cannot keep much down and we don’t want dehydration to set in.

Jackie missed all of his sessions today except for OT.  Paula worked with him at 2pm.  We thought getting him moving again would be good.  Since Jackie was skipping dinner until we could get things resolved, we decided to try some warmth and sunshine on the second floor terrace.  After a short stay we went back up to the room.  Jackie took a shower and got back in bed. Things started to move, but we have a long way to go.  We are giving him nausea meds to hopefully allow him to eat more.

This is just another hurdle Jackie needs to cross on this marathon. We continue to go day by day as it is easier for all of us.  Even though this is a set back we continue to  progress closer to his surgery, which could help speed up Jackie’s pace to get him to the finish line.

As always, thanks for your continued positive thoughts, prayers and support.

Ditto

Today seemed like it was a repeat of yesterday.  Jackie woke up and was sluggish.  We gave him a light breakfast and his morning meds.  We have been talking daily with Dr. K’s resident since he is on vacation.  She is doing a great job for being so new to Magee.

It took Jackie a while to get through breakfast so we pushed back speech.  Becca said Jackie was not speaking much and when he did it was softer than normal.  They watched YouTube and it made Jackie laugh, not like usual but at least he seemed happy.  He went right from speech to PT.  Erin is out until Thursday, so her manager Mark is working with Jackie.  Mark has many years of experience and helped Jackie complete a successful session. Paula was also in the gym checking on Jackie and speaking with Mark.

We brought him back to the room and he ate a light lunch.  We wanted to get some food in him before he took his afternoon meds.  Jackie is still having system issues so we went downstairs for a follow up X-ray.  As soon as it was over Jackie got sick. We got him back up to his room and got him in bed.  We are working on helping his system start moving.  Jackie is also getting a cat scan tomorrow and has an appointment with his neurosurgeon.

We continue to encourage Jackie and remind him that all of this is temporary.  We just need to be patient and eventually long term goals will once again be attainable.  Our short term goal of going home on Friday has now been pushed back.  A new date has not been determined.

Be happy in the moment and work on patience.  You never know when you will need to dig deep and wait for something that seems like it will take forever to achieve.

Monday, Monday

For those of you who work a typical week, Monday is usually the least favorite of the days. It is the first day of the week and signifies the end of the weekend.  I would have to say, we felt that way as the day progressed.

Once again we had a slow start. Jackie had a hard time focusing on breakfast.  He did not seem to have much of an appetite and was having some difficulty getting the food on his utensils.  After a conversation with Paula, OT, later in the day, we are wondering if Jackie’s old eating habits are starting to surface.  He never was a big breakfast eater. I could barely get him to eat a breakfast bar. These old habits are actually good because it is a sign his brain is starting to reconnect and process as it had before.  Now, because of his meds, we like him to eat a decent breakfast.  This morning it took a while, but he did.

Becca split her hour in two so Jackie could spend a half hour with the staff psychologist.  In their first half hour together Becca and Jackie tallied up the cheese steak challenge data and the winner is – Jim’s.  Jackie will be getting a cheese steak from there for lunch sometime this week!  She spent her second half hour with Jackie at lunch.  She wanted to observe what was going on herself.

Jim and I grabbed lunch at the cafe and brought it up to the room. Becca and Jackie were done at around 12:30.  Becca said he got tired and basically shut down half way through lunch.  This had happened to us before so we got him into bed for a nap.  We kept our eye on the time as we had to get him up in time to take the meds he missed at lunch and be ready for OT at 3pm.  We were able to get everything done and were ready for his therapy session.  Jim and I headed to our case managers office to review more details surrounding Jackie’s discharge.

We had just finished the meeting and moved to the sitting area outside the fourth floor gym when the resident came to get us.  Jackie had gotten sick during OT.  We got back to the room quickly,  It took a while for his stomach to settle down. Paula stayed with us and then came back to check on Jackie before she left.

We kept Jackie in bed for the rest of the night.  He had a fairly peaceful night. PTL. We will look at today as a brand new day and take things one step at a time.

A Sleepy Day

Jackie had three therapy sessions today but since the first one wasn’t until 10am we let him sleep in a little.  We were just able to get all of the morning routines done on time.  Since this would be Jackie’s last recreational therapy session with Jenna she let him pick what he wanted to do.  Jackie picked Wii fishing.  He seemed a little tired during breakfast and the trend continued while playing the Wii.  His scores were not close to previous scores and his vision seemed to be off at times.  We will have to keep an eye on this as an update was recently made to his glasses.

We had a half hour to go before Jackie’s PT session so decided to attend the group art therapy session that had started next door in the dining room.  Jackie finished numbering the count down stickers on his door poster and started a drawing.  He drew one blue line and then stopped.  His tiredness continued.  We had a busy schedule ahead and were not sure how Jackie was going to push through.

We went with Jackie to the gym for his 11am PT session.  His muscles were all very tight. The majority of the session was spent stretching out his entire body. Jackie did practice sitting and standing, but his balance seemed to be off.  We went back to his room for a quick lunch since he had OT at one.

Lunch was a struggle.  Jackie was so tired it was difficult for him to concentrate on eating.  We decided to just let him rest in his chair.  The weekend therapist for OT stopped by and we told her how Jackie was feeling.  Once again, the session consisted mostly of stretching Jackie’s muscles.  After returning to the room we were able to get Jackie to eat a little bit of food and got him into bed for a nap.  When he awoke a friend from high school and his family had come for a visit.  This was one of Jackie’s good buddies who had gone through an illness himself, so he can relate to hospital stays and everything that goes along with them.  It was great to see them, get caught up and share stories which helped to jog Jackie’s memory.

Since Jackie was rested he ate well at dinner. PTL. We decided to get some fresh air and went to the second floor terrace for his protein snack.  It was getting late so we went back to the room and got Jackie ready for bed. We are hoping with a good nights sleep he will be ready to start his last week of inpatient therapies here at Magee.

As we are about to embark on yet another transition and milestone in Jackie’s marathon to recovery, we thank you for all of your positive thoughts, prayers and support.  I hope your week ahead is padded with restful nights and wonderfully blessed days.