Monday, August 18

Anticipating A Date

We woke Jackie up right around 8am this morning.  Shortly after Dr. K and his team came in.  We reviewed the weekend and discussed the one med we thought was making Jackie extremely tired.  We agreed to just give him a nightly dose.

Jackie was eating a good breakfast which ran into speech.  Amy came to the room and helped him finish as much as he could.  She even puréed a Reese’s Peanut Butter Cup and mixed it with the remaining amount of oatmeal.  A nice treat and incentive to eat more!  The second half of the session they went outside,  Jackie was more verbal than he has been in days. PTL

PT immediately followed speech,  Erin picked up Jackie and they headed to the gym.  Stretching and standing balance were the focus.  After the session, Erin said that Jackie did not seem near as tired and was also saying some words for her.  PTL

As soon as PT was over we got Jackie in bed for a nap.  The transportation van was coming a little after one to take us to Jackie’s doctor appointment with his neurosurgeon.  Transporting patients is quite a business.  Based on the patient condition the transport vehicle is equipped like an ambulance.  Teams basically work round the clock and wait for calls to take patients from facilities to doctors appointments or to hospitals.  The drivers are all different as well as the size and condition of the vehicles.  We have waited many hours for them to pick us up in the past.  Our pick up was an exception.  The driver was here right on time and did a great job avoiding bumps along the way.  This was important because we took Jackie in his wheelchair vs the stretcher.  Our experience at the docs office is usually good.  Not much wait either in the lobby or back in the exam room.  Unfortunately that was not the case for this visit. We waited a very long time to see the doc and then longer to wait for our transportation back.  It was an extremely long day for Jackie.  Fortunately his tilt wheelchair enabled us to do needed weight shifts throughout the afternoon.

Our appointment with the doc went well.  We were hoping to get the exact date of Jackie’s surgery but know it will be within the next two weeks.  Our neurosurgeon is a caring man and has gotten to know Jackie well over the last couple months.  His team is well aware of all the struggles Jackie has been through and they continue to work with us to take his recovery to the next level. At the appointment our doc sat down and held Jackie’s hand while talking with him.  I’m hoping that gave Jackie a comfort level about his upcoming surgery.

We heated up dinner when we got back and ended up feeding Jackie.  He was so tired and he needed to eat as much as possible.  We moved him right to bed and he took a nap.  He woke up just on time for evening meds.  While he was awake we spoke with Lindsay and Florent.  It was good for him to hear their voices.  As we were wrapping up the conversation we took the phone off speaker and handed it to Jackie.  I could hear Lindsay’s voice but not what she was saying.  After a brief pause, Jackie said, “I love you,” and started to cry.  We all cried.  I can’t wait for the day when Jackie can go visit Lindsay and Florent again.  That day will come…patience.

It had been a long day that ended with the sounds of voices that mean so much to Jackie.  I’m sure Jackie will be tired tomorrow.  We are hoping for a day to regroup and recharge.

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Sunday, August 17

The Blessing Of Warm Sunshine

Jackie woke up this morning facing another full day of therapies.  He seemed awake and ready for breakfast.  Before he ate he had an ADL, activities of daily living, session with OT.  He worked to get himself ready by helping to get himself dressed as much as possible.  He washed his face at the sink and brushed his teeth.  I made him some instant oatmeal and Jackie ate the entire serving.  If you ask Jim it was basically brown sugar with a little bit of oatmeal.  What can I say, sugar is Jackie and my favorite food group.  Plus I added 4oz of milk to help with Jackie’s fluid intake so it really wasn’t that bad.  Jackie also drank more than he had in days.  PTL

We were just finishing up when the weekend speech therapist came in.  She works at Magee’s day rehab but does a weekend shift every now and then.  We all stayed in Jackies room for the session.  By the time 30 minutes had passed he was falling asleep in his chair.  ADL sessions generally tire him out.  We decided to get Jackie back in bed and finish the session there.  The move woke him up enough to finish the session.  Then he slept for a while.  When he woke up we warmed up lunch and that ran right into PT at 2pm.  Ally, a regular PT staffer, came to take Jackie to the gym.  We followed and stayed in the gym throughout the session.  Ally did a lot of stretching and also worked on sitting balance using Pete’s game.  This time it was NBA focused.  Jackie did not do as well, he was extremely tired.  We are starting to see a pattern with Jackie’s behavior after taking one of his meds for his muscle spasms.  Even though he is on an extremely low dose it seems to wipe him out.  We are thinking that maybe keeping him on just one dose at night may best.  We will review with Dr. K on Monday.

We decided to go outside for some sunshine.  We reclined Jackie in his chair and let him rest for about a half hour.  Jackie loves the sun and seemed to  enjoy it’s warmth, not to mention it’s vitamin D benefits.  When we went inside we knew Magee staffers were going to try once again to put another IV in.  It was a success this time.  The sun had warmed up Jackies body and had brought veins that had been hiding to the surface.  PTL

After another quick nap with IV fluids running, we got Jackie up for dinner and a shower.  He was tired but able to take his evening meds and fall asleep.

Today we saw glimpses of improvement and we hope it builds with each passing day.

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Saturday, August 16

A Needed Visit

Breakfast started out slow.  Jackie did not seem interested in eating or swallowing at first.  Every bite was a struggle but we were able to get him to eat a small portion of his breakfast and take his morning meds.  Amy who will be working with Jackie next week while Becca is on vacation came in for a Saturday session.  She spent the first half of the session helping Jackie eat more of his breakfast, then they went to the second floor terrace for some fresh air.  It was a beautiful day in the city.

As soon as speech was over it was time for PT.  Jackie has been scheduled for therapies all weekend since he missed some days last week and will miss a session due to his doc appt on Monday.  Erin was working this weekend.  It was great to have her work with Jackie.   She knows him very well and always incorporates new things in her sessions.  Since Jackie’s muscles still get tight she stretched many muscle groups.  This is so important and is another step toward trying to prevent muscle spasms.  They ended the session using a tool that Pete, one of the PT students designed.  It was an NFL game that incorporates many elements of PT.  Jackie enjoyed playing and did very well.

Needless to say he was exhausted.  He came back to the room and took a nap. His next session, OT, was scheduled for 2pm.  Based on how long it takes to eat, this did not leave much time to get everything done.  He slept well, woke up and had a small lunch.  Nikki came to get him and took him to the gym. Jim and I were waiting for my sisters and brother-in-law to arrive with a most special visitor – Jovie!  As soon as they got here we took her into the gym.  Fortunately Jackie was the only one getting therapy at the time so we were able to have her help with the session.  She laid beside him while he was getting stretched and she sat on the floor and helped with sitting balance exercises.  It was wonderful. PTL

We came back to the room and warmed up some of his lunch.  It is so important to get as much food and drink in him as we can.  Jovie is so good.  She laid peacefully by his side as he ate a little more.  Then she laid beside him during his nap, looking up at his face occasionally to make sure he was ok.  Jackie fell asleep with his hand touching her fur.  I can’t remember the last time I saw such a peaceful look on his face.

When he woke up it was time to try to get another IV in place.  After multiple attempts and the use of a vein finder, we stopped the process.  There are just no more veins near the top of the surface to use.  Jackie’s body as well as his spirit needs a break.  I took Jovie outside during this process.  Jim is much better than I am during these tries and we felt it best to get Jovie out of the room.  We will continue to closely watch Jackie’s fluid intake and will review all of this with his neurosurgeon on Monday.

Next up was dinner.  My sisters and brother-in-law were back from doing some laundry and running some errands for us.  Uncle Jody stepped in and helped with dinner.  Since Jackie had been so tired we let him eat in bed.  Jackie ate very well.  PTL. He seemed to enjoy having Uncle Jody assist with the meal.  It was getting late by the time he was finished.  We had to once again say goodbye to Jovie.  We walked them down to the lobby so we could squeeze every last minute of time with her.  Jim and Jackie came back up to the room and I walked her to the car.  It was a great visit for all of us!

When I got back to the room the boys were watching Little League baseball and eating water ice.  Jim fed him as much as he could to help with fluid intake.  It didn’t take long for Jackie to tucker out.  We got him in bed and he fell asleep quickly.  I truly believe Jovie’s visit gave Jackie a glimpse of home and I’m hoping that will help fuel him until we get there.

Tomorrow is another day full of therapies.  We continue to go day by day and infuse as much positivity as we can.  I won’t lie, some days are easier than others.  It has been hard to see what Jackie is capable of and then witness such a decline.  We know that this will turn around and Jim and I continue to push each other when frustration sets in.  It is so important to constantly motivate Jackie even when the days are hard.

We are blessed in so many ways through the love of our family, friends and followers of this blog.  Thanks for continuing on this marathon with Jackie.  We will get to the finish line and it will be sweet!

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Friday, August 15

Day By Day – Play By Play

Jackie seemed well rested when he woke up this morning.  We decided to keep him in bed for breakfast.  He did not eat very much but enough to coat his stomach for his morning meds.  Becca came in at 10am and spent the first half of her session in Jackie’s room.  She tested some regular food with him, but he is still not ready.  Becca was talking about her upcoming vacation at the beach.  Jackie spent many family vacations at different shore points so was interested and engaged in her stories.  He even spoke some words and when she asked what kind of fudge he liked he replied chocolate.  PTL. They went up to the sixth floor terrace for the second half of the session and played some tunes on Jackie’s portable speaker.  Even more words were said and shoulder shrugging to the beat returned!

Jackie went right to PT after speech.  Erin stretched out many of his muscle groups.  She then moved him to a bike that was programmed to do the pedaling for him.  Even though it was difficult to tell how much his right leg was working, it was great for his muscle tone.  When the session was over we joked that we would take Jackie in the gym at night so he could ride it some more. When I asked Jackie if he would want to ride it for 2 hours straight he gave a thumbs up.  He always loved riding bikes and I think it made him feel normal again.

We came back to the room and Jackie took a nap.  When he got up he had a late lunch.  The rest was beneficial as Jackie fed himself the majority of his lunch and he ate more than he has for a while.  PTL. We will take small wins whenever we can get them.  After a conversation with the dietary director it was time for OT.  Jackie got tired quickly and did not seem to put out much effort.  Paula is very good at reading people and pushed Jackie when necessary to make the session productive.  Once again we had Jackie rest and then warmed up dinner.  We helped Jackie eat a little more than we did at lunch, but he still ate a decent amount.  We will keep working at it day by day.

Jackie’s IV blew tonight so we are not giving fluids.  It is very difficult to get IVs in him as his veins have been tapped far too often.  Hopefully his fluid intake will increase to the point were an IV will not be necessary.

Jackie fell asleep watching some of the Eagles preseason game.  It is so hard to believe football season is upon us.  If I can relate Jackie’s recovery to football I would say he is still in the preseason period of his recovery.  He is working out the bugs and trying new plays.  His opening game will be the first day after his surgery and that day will determine all of the plays to be made during the regular season.

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Wednesday, August 13 – Thursday, August 14

Back At Magee

We spent the better part of Wednesday working with the Jefferson Hospital staff on the discharge process.  The PT and OT team came to the room to evaluate Jackie.  Their report was the missing piece needed for insurance approval to get back to Magee.  When all was said and done we arrived back at  Magee around 4:30pm.  Becca had sent me a text and then ordered dinner for Jackie so he would have something to eat.  Once agin we had to go through the formality of the admission process.  This is a lot of work for everyone but has to be done.  We finally got completely settled back in with all meds taken by 11pm.  Jackie was exhausted. Thursday would bring the return of a busy therapy schedule so getting as much rest as possible was key and it was already late.

We let Jackie sleep in as long as we could.   We actually fed him breakfast in bed as he tires so easily and his swallowing is still not normal.  We were glad to be back so Becca could help us with regaining his speech and proper tongue movements for swallowing.  Becca decided to keep him on a restricted diet.  It was too risky from a swallowing perspective to allow him to eat regular foods.  He did not speak much but still responds with thumbs up and down.  Our goal now is to get him to eat and drink enough to bridge him to surgery.  If possible, we do not want to have to put another feeding tube in.  That is going to be a day by day decision.

We had noticed a different wheelchair sitting outside Jackie’s door.  Because of his lethargy the therapy team decided to move him back to a chair that can tilt back for weight shifts.  Jackie cannot move this chair on his own, but right now he most likely couldn’t anyway.  Erin was back from a long weekend and got Jackie back up on his feet.  She even got him to take a couple steps again.  PTL

During a challenging lunch we spoke with the head of dietary.  She is helping us track his food and liquid intake and providing as many food alternatives as possible that are soft, high in protein and calories.  We then put Jackie back in bed for a nap with hopes he would have more energy for OT.  Paula came in and helped us in the bathroom.  She could see how tired he was. They went to the gym and ultimately went outside for their session.  Paula felt fresh air and sunshine may help.

Jackie took another nap after OT.  Once again we struggled with dinner but he was able to eat more than he had at lunch.  PTL We tried to engage him by playing with two tennis racquets and a balloon that one of the families we met had given to Jackie.  He played for a short time but was not as successful as he had been before when we played.  We went up to the sixth floor terrace for a very short time and then came back and got Jackie ready for bed. Another IV was put in so Jackie can get fluids over night.  This will help him stay hydrated.

We are looking forward to our appointment with Jackie’s neurosurgeon on Monday.  We should have more details on next steps after talking with him.

It is amazing how balanced and intricate our bodies are, all driven by the brain.  We walk around every day taking this for granted.  Take care of yourself and be kind.  Whether you realize it or not, every day is a gift filled with opportunities and blessings.

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Monday, August 11 – Tuesday, August 12

Another Trip To Jeff

Monday morning Jackie was still experiencing similar symptoms.  Jim and I were trying our best to stay positive and patient.  We spoke with Dr. K and he said the Magee staff was also working through frustration surrounding Jackie’s decline.  We all want him to get back on track. Dr. K decided to get in touch with our neurosurgeon who happened to be on vacation.  He was still able to reach him and they agreed to admit Jackie under the neuro team at Jefferson for evaluation.  As you know with TBI nothing is easy to diagnose.  The culprit could be many things. Tests were done and confirmed the correct shunt setting. We thought turning off the shunt may help, but the risks were not worth any possible short term gains.  Bloodwork was done to confirm levels of meds in Jackie’s bloodstream.  Other meds were slightly adjusted.

By Tuesday morning we had a plan to once again bump up Jackie’s surgery date and head back to Magee.  PTL We all agree that this upcoming surgery is what Jackie needs to begin moving in the right direction again. Scans were taken for surgery preparation.  We should have more details on the date soon. As the day went on we had a feeling we would not get back to Magee.  It was getting too late to have a PT and OT evaluation done.  This is necessary for insurance to review and approve before Jackie can be readmitted to Magee.

Since Jackie was in bed most of the day we got him out of bed and sat him in a chair.  We propped him up with pillows and watched some of the Shark Week programming on TV. It was another one of those moments where I hope Jackie felt as if he was getting better and doing things he used to do.

We are hoping to get to Magee sometime on Wednesday.  We will keep working with Jackie to ensure his is eating and drinking enough.  At this point our next milestone is getting to surgery. After surgery we will be able to reevaluate and set new targets and plans to finish Jackie’s course to recovery.

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Saturday, August 9 – Sunday, August 10

Weekend Update

Friday night was riddled with more muscle spasms.  We are hoping the continued IV fluids and meds will help reduce the frequency.  Jackie struggled with breakfast.  Fortunately Dr. K was working on Saturday so we were able to call him into the room.  He had already visited when Jackie had just woke up.  Dr. K could now see first hand what we had been telling him.  Jackie was just too tired to swallow correctly.  We have some ideas of why he is feeling this way, and hope that his upcoming surgery will help solve some things. Dr. K suggested we get Jackie back in bed.  After a short rest he was able to take his morning meds without a problem.  PTL

We were all looking forward to Lindsay and Florents visit.  I hugged Lindsay for a very long time when she got out of the car. It was so good to catch up on what is going on in their lives and I don’t think I need to tell you how much Jackie enjoyed their visit.  I wish Magee was closer to them.  Jackie enjoys listening to their voices and stories.  He was going to take a nap but didn’t seem to keep his eyes closed.  We told him Lindsay and Florent would still be there when he woke up and he fell asleep right away.

Sunday brought more lethargy and swallowing challenges.  Despite these hurdles Jackie managed to eat a good portion of his meals. PTL Increasing his fluid intake is something we need to keep working on.  For now, IV fluids are keeping hydration levels where they need to be.

Jackie had therapies both Saturday and Sunday.  His sessions on Sunday went much better than Saturday.  His sitting balance is starting to get a little better but he has a way to go until he is back to where he was prior to his recent hospital stay.

We all watched some of the PGA championship.  It felt a little bit like the old days.  Those moments are so few and far between.

Yet another week starts tomorrow.  We will continue to go day by day and pray for patience and healing for Jackie.  Make your week a good one, it is a lot easier than you think when you realize all the blessings that surround you each and every day.

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