Thursday, August 21

A Down Day

Jackie woke up to the same routine he has done for weeks and weeks.  He had breakfast, morning meds and then went to speech.  He hardly spoke for Aimee.  She ended up having Jackie use thumbs up and thumbs down to communicate.  When she asked him if he was sad he gave her a thumbs up.  It had been such a great day yesterday, today was back to normal.  It is hard to really know what Jackie is thinking.  I believe he is aware of everything and realizes his friends are going back to school, moving on with their lives and dreams while his life is on hold. Jim and I and Magee staffers are trying to make each day a good one, mixed with different activities. For Jackie, seeing a glimpse of what life used to be like and then going back to reality was tough.

After speech Jackie went to PT.  He had a decent session but it couldn’t rival yesterdays session.  He came back to the room and took a nap.  Aimee returned and finished her session while Jackie was laying down.  The three of us tried to engage Jackie.  Aimee asked if we had heard about the Grouper fish that ate a small shark.  As much as circle of life stories bother me, it was a fish story and that peaked Jackies interest.  It worked and helped end the session on a positive note.

Jackie woke and ate a late lunch.  Paula came to get him for OT and they went to the gym.  Just like PT, the session was not bad, just not as productive as yesterday.  Jackie was a little more verbal and seemed to be feeling better when Paula brought him back to the room. PTL

The IV issues continue.  The last two that were put in, never were able to be used.  Tonight we were going to try again.  We went to the second floor terrace to try to get Jackie warmed up.  It worked well last time, but we didn’t have as much time and the sun was not consistently out.  We went back to the room and thankfully an IV was put in with success.  We started running fluids right away since we had missed two nights.  Jackie is eating better but is still consuming less fluids than he should.  The IV helps ensure Jackie stays hydrated.

After dinner and a shower Jackie was back in bed.  Tomorrow is a new day.


Wednesday, August 20

A Motivational And Educational Day

Jackie woke up and ate a very good breakfast.  PTL I’m not sure if he was simply hungry or just excited for the day.  His best bud, Sean, was coming for the day with his Mom.  He is a PT student and was looking forward to visiting Jackie and observing and learning in a PT environment. Sean and his Mom got here just in time for speech.  The session was split in half.  Thirty minutes in the morning and thirty minutes at lunch.  The guys went with Aimee for the morning  session.

PT was next so Sean went to the gym with Erin and Jackie.  This gave Jim and I a chance to sit down and catch up with our dear friend.  We went back to the room to check in on the guys and see how the session went.  It went very well! As a bonus, Erin had scheduled a half hour of her session with Joey, Magee’s therapy dog.  Jackie loves spending time with her and it was a great way to end the session.    The combination of Sean and Joey was a win win.  Jackie was having a great day so far.  PTL It was now noon and we typically have Jackie take a nap, but today Aimee wanted to try different foods in hopes to change his diet.  She ordered chicken salad and fries and gave Jackie the choice of what he wanted.  He picked fries, so Sean and Jackie had lunch together, just the two of them.  Aimee kept her distance but was observing Jackie’s swallowing patterns to ensure he was eating properly.  It was wonderful and was probably the most normal lunch Jackie has had in a very long time!

Jackie was tired after lunch so took a nap.  Sean and his Mom and I walked to Wawa to pick up some items for Jackie.  When we returned it was time for OT.  Sean once again accompanied Jackie to the gym.  It was another great session!  Both Paula and Erin did a nice job of having Sean help where possible.  At the end of OT Jackie was walking again in the gym.  PTL  Paula said he was really doing well, in fact it was one of his best sessions yet.  Jackie was pushing himself hard and I’m sure he wanted to show Sean his best efforts.  At the very end of the session Jackie got sick.  I truly believe it was because he was working harder than he had in a while.  After the session we got him back in bed for another nap.  Before he fell asleep Sean and his Mom said goodbye.  I’m so glad they came as it was obvious how much it meant and how motivational it was for Jackie.  I also hope Sean not only learned a lot but also has a better understanding of what Jackie is doing day in and day out to get better.

Jackie took a nap and then woke for dinner.  It had been a really good day thanks to his best bud and a will to keep pushing through each day.


Tuesday, August 19

Focused On Today

Jackie slept in for a while. He woke up a couple times during the night so he was tired.  We spoke with Dr. K and his team and filled them in on Jackie’s doc appt with the neurosurgeon.  Just as we were helping Jackie get ready for the day, Paula came in his room.  We had missed her session yesterday and she was checking in on him.  She helped us get him up and in his chair for breakfast. Jackie ate and drank a decent amount.  PTL He was just finishing his morning meds when Amy came in for speech.  She took Jackie to her office and then went outside for the second half of their session.

As the regular schedule dictates, PT was next.  Erin took him into the gym for their session.  Jackie was more tired than he was yesterday and less verbal.  I think the long day at the doctors office was taking its toll on him. After the session we got him in bed for a nap.  He did not fall asleep right away which is unusual.  We did not want to wake him but didn’t have a choice.  He had to eat a late lunch and then head to OT.

Paula came in to get him and helped us with some ADL’s.  They went to the gym to finish the session.  Paula did a lot of stretching as Jackie was so tired.  We decided to try to get more fluid in him and went to the second floor terrace for some water ice.  He also slept for a little bit.  We came back to the room and fed him dinner to save his energy.  He then laid  in bed and fell asleep right away.  It was a shower night, but we felt he needed a nap prior to that activity.  When he woke up Jim shaved Jackie and then he showered.  We got evening meds in and then Jackie went to bed.  When our nurse went to hook up Jackie’s IV fluids for the night, he had a muscle spasm and the IV pulled out.  A late night attempt was made to put another one in but failed.  IVs have become an ongoing challenge.  We want to avoid putting in a pic line again.  We just need to  ensure Jackie is hydrated for surgery and his fluid intake is still not where it should be.

I wish I could blink and change so many things, but that is not reality.  Day by day, mile by mile we will stay focused on the now and the later will take care of itself.


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.


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.


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!


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.