A day at the docs…literally

Jackie woke up early this morning since he went to bed so early the night before.  We softly chatted since Jim was still sleeping.   After a while we couldn’t help ourselves and we woke him up.  The nurse came in and said that Jackie may be getting a test done and could not eat breakfast, so we decided to have a lazy morning and have Jackie stay in bed for a little longer than usual.  The test ended up being cancelled for the day so Jackie got up and had a late breakfast.  We had to be ready to leave for our follow-up appointment with our Neurosurgeon by 11:45am and were scheduled for Speech therapy at 10am.

Jackie ate a good breakfast and before we knew it, Becca was at the door for Speech.  Since Jackie would be in the chair for a while today, Becca agreed to having her therapy session bedside.  Jackie’s voice is getting a little bit stronger but is not back to normal yet.  If he holds his hand over the bandage where the trach had been inserted, he can speak a little louder.  There is still some healing to be done.

The transport driver was on time and we embarked on our first trip in a wheelchair accessible van.  I rode with Jackie and Jim walked to the appointment.  The ride was very bumpy and was actually a little unnerving.  Jackie’s head was moving around way more than I would like.  At one point I asked the driver to slow down.  We made it there in one piece, but Jackie was complaining about some pain in the back of his head.  I think his helmet was hitting the area where his shunt is located when we were hitting the bumps or turning corners.  I had to think about a way to keep his head more stable for the ride back.

Not long after we got to the waiting room, Jim arrived.  Magee had provided a packed lunch for Jackie,  but we decided to hold off on feeding him because we did not want to be in the middle of eating and get called back into the room.  We did not have to wait long after the actual appointment time to get back in a room.  The Fellow that our doc was working with in the hospital saw us first to go over some basics, then our doc came in.  We had seen our doc almost every morning for 6 weeks while we were at Jefferson. It was nice to see him again. It was also a treat to see his reaction when Jackie spoke.  He had never heard Jackie’s voice or seen him this responsive before. We ran down a list of questions and overall Jackie is progressing in a positive direction.  Some stitches were removed and the setting on Jackie’s shunt was changed.  We will need to report any neuro changes we see back to the doc in the case the setting needs to be adjusted back to where it was. We follow up again at the beginning of July and go from there.  It is too soon to tell when Jackie’s final surgery will be scheduled.

We returned to the waiting room and waited 2 hours until the transport van arrived. Magee does not own the vans, they use a service for transportation of their patients.  That made the day way longer than it should have been for Jackie, he was in the wheelchair for a much longer period of time then he should have been.  Fortunately the transport van going back was larger so Jim could ride with us.  Plus the ride was smoother.  We got back to his room and got him settled in bed for about 45 minutes before getting him out again for dinner.  He was extremely tired.  We got him back in bed as soon as we could.  He will hopefully get some well deserved rest tonight.

The experience today was eye opening.  We were the parents in the waiting room who had the child that everyone was staring at.  We had to rely on others to transport our child and we worked through some of the challenges that go hand in hand with caring for someone in a wheelchair.  I am praying Jackie will be walking in to his next appointment with our doc, but I will never forget what we are experiencing now.  God bless all of the parents of children who face physical and mental challenges.  You do amazing things everyday that very few actually realize and you take parenthood to an entirely different level.

Thanks so much for all the prayers, love and support.

TRACH OUT TUESDAY

Need I say anything else?  After months of waiting, the trach has finally been removed!  PTL!  Talk about a huge milestone.  We celebrated with balloons and lots of Hershey candy.  Jackie enjoyed the York Peppermint Patties, his only approved candy item.  We also hung a poster on Jackie’s door decorated with old trach paraphernalia.  The post trach healing will take about a week or two.  Jackie’s voice will be softer for a couple days and then should get back to normal.

Jackie’s day started out with breakfast and then PT.  Erin had to go to another facility later in the day so we snuck in a session with her before she had to go.  She helped Jackie practice wheelchair transfers in his room and then we went to the gym.  Some of Jackie’s muscles remain very tight.  Erin used heat to loosen them up and then it was time for a stroll.  Erin wraps an ace bandage around Jackie’s left ankle and foot in a way that is primes it for walking.  When Jackie’s body is aligned correctly, the left leg should just swing into a step.  Jackie’s head and torso strength still need work.  If the torso and head are straight, which is hard for Jackie, then the walk is efficient and goes well.  Walking with help is absolutely exhausting for Jackie.

We moved right to speech therapy.  Jackie continues to amaze me with his answers to knowledge based questions.  We still have a long way to go, but we seem to be starting with a good foundation.  Every morning we have started to review the calendar with him.  We review what day it is, what month and year it is and what season we are in.  For the longest time his answer to what month we are in was February, which makes sense considering he probably does not remember that much since then.

We were a couple  minutes into his speech session when the Respiratory Therapy supervisor came into Jackie’s room to remove the trach.  That timing was perfect as Becca could help Jackie with post trach removal speech differences.  Jackie actually tolerated the procedure well.  Tough young man, don’t need to say anything more.

We got Jackie back in bed and he rested but did not nap, after all it was Trach Out Tuesday and we needed to party.  Staffers stopped in throughout the day for a treat and to give Jackie their warm congratulatory salutations.  We were back up for lunch and then it was time for OT.  Paula was at another building so Jackie had his session with a different therapist who had assisted Paula in the past.  More transfers were practiced, stretches were done and Jackie also worked on throwing small items into a bin from the assisted sitting position.  We headed back to the room and Jackie went right to bed.  He was tired.  He took a well deserved nap.  Jim ran out to get an electric razor.  The last time Jackie was shaved was in the hospital and he was due.  We figured we would wait until the trach was out because it would be easier.

It was time to get up once again and in the wheelchair for dinner.  About halfway through Jackie said he wanted to go back to bed.  He finished almost all of his meal and then we moved to the community room.  That did not last long as more people came into the room and it got loud.  We went back to Jackie’s room and Jim shaved him.  Right after that we moved Jackie to the shower table for a nice warm shower.  Once he was back in bed it did not take long to fall asleep.

Jackie had a huge day and in his terms it was “epic.” Tomorrow is another big day as we have our first follow up appointment with his Neurosurgeon from Jefferson.  We are excited for the doc to see just how far Jackie has come in a little over a week and a half.

We are so grateful to be at Magee, receiving quality care for Jackie.  I am not sure why God chose this path for Jackie but I do know that it feels like he is being watched over by many angels. The miles ahead will continue to be a challenge, but I believe Jackie’s youth and determination will get us to the finish line.

Thanks for your positive thoughts, prayers and support.  Tomorrow is hump day, which used to be a favorite but Trach Out Tuesday may have just taken its place!

300%

Jackie had another good night of sleep.  It is so important for his body to be fueled with rest.

Like yesterday, Jackie had speech right after breakfast.  Since we let him sleep in, we were running a little late.  Becca was off so her supervisor was covering the session.  She observed the last part of his breakfast and then moved him to the community room. She asked Jackie the usual questions and then asked him some situational ones like, what would you do if you got home and didn’t have your key?   She then worked on his short term memory by asking him to repeat three words.  She ended the session asking him to repeat the words back to her in alphabetical order,  Jackie did well. He stayed focused on her for most of the session and answered the majority of the questions correctly.  His body was hurting from sitting in his wheelchair for a little over 2 hours, so we put him back in bed.

Before we knew it, it was time to get back in the chair and into the gym for PT.  They started working on transfers from the chair to the mat; however, shifted to lying on the mat as Jackie was not feeling well, After laying down for a while he felt better.  Erin had him swing his legs off the mat and then try to push himself to a sitting position.  As Jackie’s left side is still much weaker than the right, this takes incredible willpower and strength to try to do what she was asking.  Once sitting, she also helped move him to a standing position.  While Jackie was bracing himself on a large vertical mat, Erin was helping to hold him up.  She had Jackie place small cones on the top shelf of a rolling wall.  Both Jim and I are amazed to see Jackie’s strength increase a little bit each day.  PTL. The exercises that he is doing are not easy.  Jackie is working through pain and frustration because he so desperately wants to walk again.  We reminded him that all we ever ask is to give 100% to whatever you are doing.  Jackie is giving 300%.

We headed back to the room and the lunch trays were already here. Paula decided to have Jackie’s OT session over lunch.  In fact, she told Jim and I to go get lunch and come back.  I must admit this was very hard for me.  I have total trust in Paula, it is just hard to let go when one of us has been beside with him for 90+ days.  My sisters were here so we went down to the cafeteria and then sat out on one of the two outdoor balconies.  It was nice.  We went back to the room and found that Paula and Jackie had a great lunch.  She rearranged how the table tray would work better for eating in his wheelchair and even did a wheelchair  transition back to bed.  We will still need to use the lift, but I know it will only be a matter of time until he will eventually lift himself from his chair into bed.  Exhaustion set in and Jackie took a long nap.

Next up was dinner.  When eating, Jim told Jackie that he was doing really well and at some point soon the three of us will be eating meals together.  Jackie looked at Jim and said, “That would be a dream.”  I must admit, his response took me back.  I myself take independently eating on my own for granted.  Here is my 19 year old son, sitting in a wheelchair with a bib on, who is very aware that his parents are teaching him how to eat again, dreaming of the day he can just eat on his own.  I know this day will come soon, but the reality of the current situation can be a little overwhelming if we would let our minds go there – but we don’t.  At least not for long,

The remainder of the night was all about rest once again.  Tomorrow will bring another new day.  Hopefully when you are feeling a little lazy you will think of Jackie and give life your all.  Your prayers are felt and working.  Thank you for continually sending them to Philly.

The positive power of friendship

Jackie slept the majority of the night.  He is starting to either sleep through or at least fall back to sleep quickly every two hours after his body is turned to a different position in bed.  We let him sleep in a little this morning as he is still tired from his busy first week here at Magee. When he woke, he was very hungry and ate a good breakfast.  Before he was done, the weekend speech therapist came into the room and Jackie’s first therapy for the day was underway.  It was good to see Aimee again.  She was the therapist that did Jackie’s first evaluation, the day that he spoke his first words.  She worked on Jackie’s short term memory and then completed some reading worksheets with him.  They are starting out easy, but so far his reading comprehension is good.

Right after speech was over he went to the gym for PT. We met another weekend therapist who followed exercise suggestions from Erin.  She had Jackie work on his chair transitions, basically moving from his sitting position in the chair to a sitting position on the gym table/mat and vice versa.  This is still an assisted physical activity for Jackie.  She also had Jackie work on his head strength.  She pushed him hard, Jackie was getting tired.  She managed to get three stands out of him.  I was so proud of his perseverance.  It was time to head back to the room for a well deserved and needed nap.

Once again we let Jackie sleep a little past his lunch tray delivery.  We figured sleep was more important and we could also heat up his meal if necessary.  It wasn’t long before it was time for OT.  Jackie was starting to wear thin.  He was starting to complain about pain while being in his chair and his leg muscles were also getting tight.  Eventually he will get stronger, but for now he always seems to start his OT sessions tired.  Like Erin, Paula gave the weekend therapist homework for Jackie to complete.  He started to work on chair transfers but Jackie mentioned he was feeling sick. The therapist moved from physical exercises to mental ones.  He was wheeled under a table and did a quick exercise with fake coins, dividing them in groupings by coin and then counting and adding the sum of the subsets.  Once again he stuck it out and worked to complete his last assignment to print his name. He took it one step further and wrote a very short note to Paula.  Both her and Erin will back on Monday even though it is a holiday.

Jackie then had some special visitors.  Based on our request, it has been a while since anyone has visited.  This particular group of very close friends was the perfect medicine for Jackie.  His smile lit up the room as he was surrounded by his best buds.  They all talked to Jackie and laughed. It was absolutely wonderful.  I thought Jackie would get tired sooner than he did, but I don’t think he wanted their visit to end.  It was like old times, a glimpse of how life used to be and a vision of how it will be again.

After the visit, Jackie tried to rest but was too hungry.  He ate a good dinner and then got a shower.  Feeling refreshed and clean, he settled in for the night.

As we have seen this weekend, Jackie’s therapy schedule every day is busy and he gets very tired.  If you are planning to visit, please get in touch with either Jim or I first before making the trek to Philly. We can help identify the best times and days for the visit.  It is very important that at this early stage in Jackie’s rehab he does not get over stimulated.

We are truly humbled and amazed by the support we are still feeling and receiving from all of you.  Even though Jackie’s journey is going to be long, he will make it thanks to all of your positive thoughts, prayers and love.  Thank you from the bottom of our hearts.

R & R

Today was a day Jackie could rest and relax.  He has worked so hard getting through his first full week of therapy.  His muscles ache and cramp and his body is still hurting, trying to adjust to sitting in a wheelchair.  All he wants to do is walk.  A couple times when we said we were going to go somewhere, he said I want to walk there too.  We are hoping this deep desire to get back to normal continues to drive his recovery. We cannot allow frustration to creep in and impact his positive progress.

As I mentioned before, Jackie is having some problems with short term memory.  The one fact that he didn’t forget in the last couple days was that Lindsay was coming to visit today.  I just love having the entire family together, and I can see how  much it means to Jackie.  Early in the visit, Lindsay experienced the same emotional moment that I had a couple days prior.  She leaned down and hugged Jackie.  She told him she loved him and he responded back with those same three words, which in this situation have more meaning than you could ever imagine.  Florent and his parents were also visiting.  Jackie really enjoys Florent’s company.  The combination of Lindsay and Florent make it a 5 star day for Jackie.

There was only one therapy session that Jackie had scheduled for today.  It was his first recreational therapy session.  He honestly was not too excited about going, but we coached him to have an open mind and positive attitude; plus Lindsay was going to come along.  We went into the community room and the therapist had Jackie play a giant size version of Connect Four.  Jackie had played this at Jefferson and got bored quickly. After a short time, the therapist was moving in a different direction.  She put a Twister sized plastic mat on the floor.  The name of the game was bullseye.  You basically throw small bean bags toward the mat and what ever number you land on are the points you receive.  It was Jackie against Lindsay.  Surprisingly Jackie released the bean bags and in his Corn Hole form managed to beat Lindsay hands down.  Lindsay was a good sport and a little bit of sibling competition is always a good thing.  The session was over in less than an hour and I think Jackie will be looking forward to the next one.

The rest of the day Jackie was in and out of his wheelchair for meals only and then back in bed for some rest.  His appetite has slowed slightly but I think his exhaustion not his hunger is driving this behavior.

Tomorrow he is back to a more regular therapy schedule.  These sessions are basically make up sessions for the ones he will miss when he attends a doc appointment at Jefferson this coming Wednesday.  I’m hoping his rest and his visit with his sis will kick start his day tomorrow.

One of Jackie’s aides today was a young, caring man who is going to be starting PT school in the fall.  He also was in the military and experienced one tour of duty,  Jackie enjoyed the brief conversations he had with him prior to Lindsay’s visit.  I was talking with him at one point and he said that every day he works at Magee it is a reality check for him.  He has had many of those moments in his life and he gets it.  As everyone enjoys your cookouts this weekend, please do not forget to thank those that have served our country.  And when you are in the backyard playing Corn Hole or any game, take a moment to truly appreciate what you have, including the simple and basic ability to release the bean bag from your hand.

Week One

Today marked one week that we have been at Magee.  With new admissions coming in throughout the week, we have already lost our new patient status.  Over these past couple of months we have become used to transitions and change.  The transition to Magee has been wonderful.  The staff is knowledgable, caring and truly enjoys working here.  Jackie’s treatment is uniquely catered to him and the importance of routine and daily schedules is key.  Jackie has always done well when there is a ‘plan’ for the day, so this environment is just what he needs.

Jackie woke up ready for breakfast.  Not a surprise as his appetite has been very healthy.  Much to his excitement, there were 4 large freshly made pancakes under the cover of his breakfast plate.  With the help of extra syrup he ate all of them.  Jackie and I like to joke that just like in the movie ‘Elf’, syrup is one of our favorite food groups.  The plate of pancakes also reminded me of the times his buddies would sleep over at our place and I would make them pancakes when they woke up. I know it is good to stay focused on the present, but it felt good to think back to those wonderful memories.

Jackie had an eye exam this morning at 10:00am so his Speech therapy was going to be split into two half hour sessions.   Because Jackie is still having some pain while sitting in his wheelchair, we decided that it was best to have the first half of his session in bed.  While Becca was working with him, I was sitting close by.  As I heard him struggle to answer some of her short term memory questions, my mind started to wonder down the path of ‘why’ and sadness.  I quickly had to change my mindset as I knew if I didn’t tears would start to flow and that would not be good for Jackie.  TBI recovery is a marathon not a sprint.  We will get there!

Shortly after the session was over we hoisted Jackie back into his chair and  headed to the eye exam in the gym.  There is an office there where eye docs come in for visits,  it was confirmed that one of Jackie’s eyes is lazy.  We are working on correcting it by placing a special lens cover on his glasses.  This should hopefully allow the brain to start using the eye more.  We went right from the exam to PT.  Jackie is getting stronger at going from the wheelchair to the PT mat. This is still all assisted by the therapists, but I can tell he is starting to use more of his strength to assist.  One goal of the session was to stretch out Jackie’s back by getting him on his stomach.  A challenge with that is his feeding tube; however, with the help of pillows Jackie was comfortably turned over.  He stayed that way for a couple minutes and then was turned again for more stretching.  Jackie has been verbalizing that he wants to walk, so Erin and Paula got him into the main area of the room, took a side and with their help Jackie took more steps than he has ever taken.  PTL.  Granted, he is far from walking on his own, but every baby step gets us closer to the real thing.  Even though Jackie was exhausted and sore, he keeps trying hard and I know this little stroll was just what he needed to mentally keep pushing in a positive direction.

When we got back to the room, lunch was waiting.  Actual chicken salad sandwiches awaited consumption.  Jackie finished almost one of the two sandwiches on his tray when Becca came in to finish up his Speech therapy for the day.  To Jackie’s surprise she had purchased a Philly soft pretzel at the train station on the way in and assisted as Jackie ate the entire thing!  As he was eating he said the words ‘Jim Junior’, this did not make sense to Becca but made us laugh.  Jim absolutely loves Philly soft pretzels so Jackie now felt that since he finally ate one he could be Jim’s Jr.  Jackie finished up a little bit more of his lunch and then went back to bed for a short nap – definitely needed.

Before long it was back out of bed, in the wheelchair and back to the gym for OT.  Paula sat him on the side of the mat and with help from another therapist, he sat on the edge and engaged in some motor skill and mind exercises leaning on a table.  This position helps to strengthen his torso and neck. Erin stopped by and together with Paula, brainstormed another chair option for Jackie.  The pain he was experiencing in the chair needed to be resolved.  We headed back to the room and moved Jackie back in bed.  He fell asleep quickly.  During his nap, Paula came back in the room and switched out his old wheelchair for a different one.  They moved Jackie out of bed and it seemed to be less painful for him.  He went back to bed and fell sleep quickly.  We let him sleep a little past his dinner time in order to get some needed R&R.

He was still tired after he woke up from his nap, but managed to eat a large portion of his dinner.  We wheeled him into the community room for a half hour after eating, then it was time for a shower and bed.  We used the shower table again.  Jackie seems to love the feel of warm water on his body.  Who wouldn’t after having so many bed baths. We got him back in bed for the night.

The marathon for Jackie continues, and we consistently feel your love and support at each mile marker.  Thank you for everything – the positive thoughts, prayers, support and love.

Test results

Jackie’s night was not near as peaceful as in the past.  The pulse ox study required the hard plastic probe be placed on a finger or toe all night.  We chose the toe since putting the probe on a finger was risky as it could reach his head. I asked why we could not use the adhesive probes which are much smaller and comfortable for the patient – there were none available.  As we had predicted, the probe continued to fall off and alarmed fairly often throughout the night.  The positive is that he passed the overnight test, proving his oxygenation level stayed at acceptable levels with the trach closed. PTL. The trach will still need to stay in for the next couple of days.

Before Jackie got out of bed, the skin and wound care team stopped by.  They examined Jackie and made recommendations for areas of concern, which were not many.  They also work with the therapy teams and based on their observations, make suggestions for the type of wheelchair cushions to use as well as an estimate of the amount and timing of wheelchair weight shift changes.

Jackie then ate a big breakfast and then it was time for his third swallow test,  Becca picked us up and we headed down to the testing room. Jackie sampled many different foods, the X-Ray confirmed the food was being swallowed correctly,  He passed all the tests!  This means he is moving from a purée diet to a ground diet and in a couple of days may be moved to an almost non-restricted diet. From a liquid perspective, Jackie has been cleared to drink anything.  We just have to take things slow which is easy for us, not for Jackie. We finished up the session in Jackie’s room where Becca treated him with small bites of soft pretzel and even some sips of Mountain Dew.

Physical Therapy was next.  Erin came and picked Jackie up in the room.  We headed to the gym.  First item on the agenda – a new seat cushion for the wheelchair,  All Jackie wanted to do was pull off his helmet,  Erin did a great job of explaining how many minutes of the session would require Jackie to wear his helmet and how many did not.  They knocked out the exercises needing the helmet first and then moved to mat/table exercises.  Jackie did have to put his helmet back on at the end because the last exercise was standing.  Each time, Jackie is using more of his strength to stand up.

When we got back to the room, Becca brought Jackie a turkey and cheese sandwich as well as an egg salad sandwich,  He ate both of them and then proceeded to eat the majority of his last puréed lunch.

At 1:30 the Recreational therapist stopped by to talk with us.  She asked Jackie questions about what he liked to do for fun; of course basketball and X-box were at the top of the list.  She reviewed many options for Jackie’s participation and will work with our regular therapists to either combine or work in extra sessions for recreational therapy.  We can also start on the weekends first until Jackie becomes stronger.  Part of this program includes art and horticultural therapy sessions.  We are so excited about all of the therapy options that are available to Jackie and will plan to participate in as many as we can.

Before we knew it we were heading to the gym for OT.  Paula took us to the quiet room and worked on stretching tight muscles.  Since Jackie has been bedridden for so long, there are many muscle groups that are extremely tight.  Loosening these up are key to later success when it comes to unassisted sitting up and eventually walking. She also worked on posture and head strength.  She did a brief eye exam and has planned for Jackie to see eye docs tomorrow.

At this point, Jackie was exhausted.  Paula came back to the room with us and helped us get him in bed.  We were hoping he would take a nap before dinner.  The nap lasted about 5 minutes.  All Jackie was thinking and talking about was food.  We finally got him up and he ate his first ground meal; cut up meatballs and spaghetti.  He loved it!!

After sitting in his chair for 30 minutes after dinner, we moved him back in bed.  He continued to be restless until about 1am.  I’m hoping the rest of the night will be peaceful.

Thank you for your continued positive thoughts, prayers and support.

Checking off milestones

Day three of rehab was upon us.  Jackie woke up hungry so we dove into our new normal routine.  We hoisted him out of bed into his chair.  He had a big breakfast, still eating double portions of the puréed meals.  You always hear how good nutrition can make such a difference, I am seeing that first hand.  We struggled for so long with Jackie’s nutritional intake.  Now that he is consuming what he should, it is amazing the positive impact it has on his body.

After he eats, we need to keep Jackie in a sitting position for at least thirty minutes. Today we moved him back in bed and sat him up in preparation for another milestone.  Our doc came in and within minutes Jackie’s pic line was out.  PTL. He had just finished up his last of many antibiotics so keeping the pic line in any longer was just creating another risk for infection.  It is so nice not to have the double IV ports hanging out of his arm.  The site had to constantly stay sterile and could not get wet.  Day by day, mile by mile we are getting there.

His Speech therapy was going to be split into two half hour sessions today.  His first session started at 10:30, so it gave Jackie a little extra time to rest after his pic line was pulled.  Before we knew it he was back in his chair and working with Becca.  His new helmet still seems to be a point of focus for Jackie.  This helmet is still much better than his original. I think the fact that his head still itches doesn’t help.  His session went by quickly but ended up with some singing and snapping to YouTube videos. Becca would be back at noon with a chicken salad sandwich for Jackie to try.

Erin came and got Jackie right away and we headed to the gym for PT.  To our surprise, she had reserved Magee’s therapy dog to start out Jackie’s session.  To say the least we were all thrilled and so happy.  If you remember, the therapy dogs were not permitted to come into Jackie’s room in the hospital, so the opportunity for Jackie to fully engage with a dog was wonderful.  The gym is a busy place full of many voices and noises.  Erin took us back to the quiet room and Joey and her Mom followed.  Joey, like Visa the therapy dog from the hospital looked like a small black lab, but she also was part Golden Retriever.  Once we got into the room, the magic happened.  Jackie was moved from the wheelchair to the mat and Joey laid in Jackie’s arms right beside him.  I cried.  We have all been missing our Golden Retriever and to be able to see Jackie actually touch and feel a dog made a world of difference, you could see it in his face.  It was like for that moment his injury was nonexistent and he was happy and relaxed.  We ultimately had to say goodbye, but plan to see Joey again.  We are also hoping to bring our Golden for a visit soon.  There was work to be done, so Erin finished out the session with stretches and getting Jackie to a standing position.

Next up, back to the room for a chicken salad sandwich.  Jackie was tired, but ready for the chance to eat real food,  He successfully ate all of the sandwich and also ate a sliced pear. He is scheduled for another swallow test Thursday morning at 9:30am.  The result of the test will determine if Jackie can advance off the puréed diet,  After Becca left, Jackie ate almost his entire regular puréed lunch  tray of food. Jackie’s back was bothering him so we moved him back into bed to rest.

By 2:00 he was up again, in the wheelchair and headed to the gym for OT. As we were wheeling into the gym, Paula was starting to come out to find us.  Paula is really working on Jackie’s neck, he favors one side and it is weak, each day we are seeing improvements. Jackie then experienced another milestone,  he released and threw a ball.  Knowing Jackie played b-ball, Paula gave Jackie a small ball and had a net.  He made a couple baskets while sitting and then Paula moved him to a standing position to shoot again.  Even though assisted, seeing him stand brings such wonderful hope for recovery.  We had been working on this for a couple weeks.  Another milestone was reached and this time there was a new pair of sunglasses on the line.  They can now be ordered and shipped to Magee.

It was getting close to dinner, but we still moved Jackie back to bed to catch a quick nap.  After eating a good meal, we wheeled Jackie into the community room.  Jim and I are a quick bite for dinner.  Not long after, we went back into Jackie’s room and got him ready for a shower,  we used the same shower table as last time.  Jackie was comfy and clean.  We moved him back into bed and after getting some meds and trach care he was ready for the night.  His trach is still capped, so he was prepped for a pulse ox study.  A probe was taped to his toe for continuous recording of his oxygenation level throughout the night.  The results of the test will determine next steps and timing of trach removal.  It can’t be quick enough for any of us.

Setting and defining goals are important and can play a role in all of our lives,   the key is staying strong and on course.  There will be many milestones we strive to achieve during Jackie’s marathon to recovery and Magee will help us check them off the list one at a time.

A good fit

Besides short periods of being awake due to nursing or respiratory visits or positional turns, Jackie is having peaceful nights.  We are all getting used to the new routine and surroundings.  All of our interactions with the staff have been positive and the facility itself has much to offer in terms of rehabilitation equipment and common areas for a change of scenery.  Both the second and sixth floors have outdoor terraces that will allow supervised escapes from his unit on the fourth floor.  Overall our initial gut feeling about Magee has been correct and our choice of rehabs appears to be a good fit for Jackie.

Today marked the second day of therapy sessions.  Jackie made it through all of them but was bothered the entire time by his helmet.  Both Jefferson and Magee had attempted to correct the fit with padding, but to no avail until the last session today.

As per the schedule, speech was the first session of the day. The goal of the session was to try a food that was not puréed to see if Jackie could properly swallow it.  Getting to this point was challenging as Jackie’s focus was on reaching for his trach and pulling off his helmet.  Becca did a great job of getting Jackie back on track and by the end of the session he successfully tried eating crumbled chocolate chip cookies mixed with pudding.  A positive step in the right direction.  Another swallow test will be happening soon in hopes Jackie can advance past the puréed diet to a ground diet…baby steps.

Next up was PT.  Erin picked us up and we headed to the gym.  From our first session with her we could tell she was a genuinely caring person.  Jackie had been complaining about lower back pain and was still bothered by his helmet.  A positive for Jackie is that when he is on the mat in the gym he can take off his helmet.  Many muscle groups were stretched including the muscles on the right side of Jackie’s neck. Despite the fatigue and pain, Jackie continues to be strong and is working hard.  At the end of the session and with the assistance of two of the therapists, Jackie was elevated to the standing position.  Even with help, it has to feel good to be upright and standing tall.

After eating a good lunch, Jackie went back to bed to relieve some of the pressures of the wheelchair from his body. In about an hour he was lifted back out and was heading to OT in the gym.  Today was our first day to work with Paula, we had heard great things about her and we found them all to be true.  Jackie seemed to connect well with her and she had a natural ability of keeping him focused.  She did different stretches with him and also fitted him with a new helmet – hallelujah!  We had no idea how heavy his other helmet was until we compared it with the new one.  Jackie still does not love it, but he is tolerating it so much better as it will continue to be a necessity until his surgery later this summer.  Erin stopped by and together they decided on a new back for his wheelchair and adjusted his head rest.  The net result – a good fit for Jackie.

Jackie headed back to bed and was up again in an hour and a half for dinner.  He continues to eat the double servings he is getting which is so important as he needs both the nutrition and the calories in order to gain weight.

Not long after dinner he was back in bed for the duration of the day.  Our case manager stopped by and we had a beneficial conversation with her.  She will help us with many things while we are at Magee, everything from weekly team updates to future discharge planning.

It was another good day at Magee, filled with many things that add up to a good fit for Jackie.  PTL.

A big day

Today started the beginning of Jackie’s official rehab schedule.  Every Monday through Friday he will meet with the same therapists for an hour each day and they will work with Jackie until he is deemed well enough to be released for outpatient therapy.

First up was Speech.  The therapist stayed in Jackie’s room for the session and we were able to observe.  She asked Jackie questions about his hobbies, interests, favorite foods and movies.  He struggled with some of his answers but was on point for the majority of them. A highlight for Jackie was the fact that she brought real water for him to drink.  Seriously talk about taking things for granted.  Just to have a couple sips of cold, non- thickened water was a huge teat for Jackie.

Next up was PT. Jackie was already tired from the speech session but he pushed on.  His therapist picked him up in the room and we headed to the gym.  Fortunately for Jackie, a large portion of the session was working on wheelchair adjustments so be was able to  rest on the PT table and get used to the gym environment. It was very busy and full of sounds.  We may move tomorrow’s session to the quiet room.

We headed back to the room and it was already time for lunch.  Jim and I are still feeding Jackie.  Eventually he will move out to another room to eat with other rehab patients. Jackie’s appetite is strong.  He is being served double portions of food and in most cases is eating all of it. His nutrition through his feeding tube is only occurring overnight.  It is time for Jackie to start gaining weight and he is well on his way to doing so.

Jackie has to sit upright for 30 minutes after eating.  He also has to be angled back in his wheelchair every 30 minutes for the purpose of shifting his weight.  The focus is still on ensuring his skin stays healthy.

We moved Jackie back to bed.  The psychiatrist stopped by and had a private conversation with Jackie.  We will be relying on his expertise to guide us through the emotional portion of Jackie’s healing.  To our surprise Jackie did not take a nap and before we knew it, it was time to get him back out of bed for his last session of the day.

The OT team came to the room and took Jackie back to the gym.  During this session he did some exercises and they worked on his helmet.  We will try to improve the fit tomorrow.

Jackie took a short nap in bed after this session and then it was time for dinner.  Once again Jackie was on the clean plate club. PTL. We wheeled him into a community type room and looked out the window until the thirty minutes had expired.  Then it was back to the room for a shower and then to bed again.  This time we used a wheeled table for his shower which worked much better than the chair.

Jackie seemed very relaxed after we got him back in bed.  We talked with him for a while and then he fell asleep.  His  vocabulary increases every day and we are seeing much of his personality coming through.  PTL

Tuesday Jackie will get up and we will start things all over again.  Each part of Jackie’s recovery has its own challenges.  We will work side by side to get him through this phase as well.

Your positive thoughts and prayers are felt all the way in Philly.  Thank you for cheering Jackie on in the next leg of the marathon!