A day of rest

Jackie had another restful night and a relaxing day.  I think if worked out well that we came back on a Friday.  It gave all of us, especially Jackie, a chance to  get used to the surroundings and some of the routines prior to getting started with his regular therapy sessions.

Every week Jackie will have his ST and PT sessions in the morning and will have his OT session in the afternoon.  From what I saw in his evaluation sessions, I believe Jackie will like it here and will work hard every step of the way. I am hoping that by weeks end, we should have a good feel for how long Jackie will be here.  Even though this information will help with planning, we will continue to tackle each new day as it comes.

I cannot tell you how much joy is in my heart now that Jackie is talking.  PTL. Don ‘t misunderstand, we are not engaging in long conversations.  On the contrary, he is still sharing one word or very short phrases at a time.  But it is so wonderful to just hear his voice.  We no longer have to guess how he is feeling or if there is something he wants to do, ie: apps, TV, music listening.  We can just ask him.

We Skyped with Lindsay and Florent tonight.  I could have stayed on the call forever to never lose sight of the smile on Lindsay’s face when she heard and saw her brother speak.

Speech is a wonderful gift. Use it wisely and never take it for granted.  Have you ever forced yourself to stop talking for a couple hours. If you did, I’m sure it was much harder than you thought.  I have a feeling Jackie is gong to be an excellent listener after he has recovered from all of this.

Thanks for your positive thoughts, prayers and support.

Father and Son, what a wonderful moment in life when your “family name” will be carried forth. Very macho, extremely testosterone like, and definitely worthy of high fives, chest pumps, forearm bashes, and other manly ways of a congratulatory “you did it”. Sorry Lindsay, nothing against you P-nut!

To Jackie,

As your father, mentor, role model, friend, and foremost Dad (we’ll get back to that later) I was  entrusted by your birth to help guide you along the path of what I refer to as “Male-Dom”. I, like you, have had both positive and negative influences in my life. I, like you, have had great colleagues, friends and family that helped shape my life. Your venture from newborn to young adulthood flew, quite frankly! You fortunately have morphed into a great combo of mother-father and have had what I would call the best sibling role model one could ask for.

Life was cruising along, we experienced many adventures as father-son, all of which are too many to list. You follow your gut and enroll at BU, your parents alma-mater. You contemplate pledging, you find a major and are enjoying college life. ( no surprise to us) Then your Mom and I get “the call”. Unlike any feeling I wish upon any parent, we rush to your side at Geisinger! Life has a funny way of slowing down, almost to a trickle. All those “father-son” adventures come flooding back.

I wish, like all, that we could rewind the morning of Feb. 23rd. Not possible! So we sit, watch and wait for you to heal! As prayers rain down (pour down) we pray and hope to see those awesome hazel eyes. You see, the blessing was that you were here with us and that was, quite frankly, a miracle in itself!

You endure a monstrous road back, details that Mom has logged in the blog. Now we are here, day 85!

Were do I start? You have shown incredible strength, courage, fortitude, and resiliency. You have experienced more than any 19 yr. old should in a lifetime let alone an 85 day period, but you show a tremendous will. No words, some hand signals, lots of laughs and just recently we’ve cried together and then there was that spoken word…”Dad”! You did say milk and mom, first. That’s ok! I had promised you when you last got sick that my next tears will be that of joy. I have to admit that the day you first showed us your cry I may have broken that promise. Nonetheless you’re sitting on the PT table and I dare you to say “Dad”! You make eye contact and for all to hear you say “Dad”! My boy, my son, my bud, and my new hero! Crying and sobbing, we both hugged. I told you that they were tears of joy. I quickly wiped my eyes and set sights on getting you to laugh!

They say everything happens for a reason, and truthfully, I have always believed that God has plans and no sense arguing with that. We have seen an unbelievable outpouring of thoughts and prayers. I know you’ve gained strength from that, as we have. You are my hero and beloved son, and I feel blessed to have you here today! I will shed more tears of joy, I believe that. Our marathon continues, I will be with you every step (as many others) and we will finish this together!

I love you!

Dad

A big, huge, miraculous day

I think Friday night was the best sleep Jackie has had since February.  Whether it was the ambulance ride, the new bed, the lack of leads, the quiet, sheer exhaustion or the fact that he may not have felt hungry or thirsty anymore, it was wonderful.  The Respiratory Therapy team was able to turn off the humidified air by putting on a special attachment to Jackie’s trach that enables his own breath to create natural humidification.  It allowed Jackie to sleep on his left side, another first since February.  PTL

We started the day with the OT team.  Jackie was given a bed bath and was evaluated based on the things he could and could not do.  Tasks like washing himself or putting on his socks.  He is trying hard, but there is much work to be done here.  After the bath, Jackie was hoisted in a similar lift system as the hospital into his wheelchair.  Next up was his ST evaluation.

The ST team accessed Jackie by feeding him breakfast and testing his verbal skills.  His appetite was huge and he ate almost everything on his tray.  His speech was nonexistent.  I was starting to get concerned if Jackie would ever talk again.  He had started mouthing words, but with no audible sound.  Then it happened, Jackie really wanted something during breakfast, Aimee probed him to say what he wanted.  And there it was, as clear as could be the word milk.  I wanted to break down and cry but knew I had to keep it together since Jackie was eating.  By the end of the session he had verbalized the words milk, good, eggs and the big one – Mom.  I could not stop the tears on that one.  Without a doubt this was an answer to prayer, a beautiful gift that was given back to Jackie.  This meant the doorway to communication was now starting to crack open.

Jackie stayed in the wheelchair and headed down the hall to the gym for his PT evaluation.  The goal of the session was the same, to get a baseline report on Jackie’s ability level, this time from a physical perspective.  The team had him do various exercises on a large table, very similar to the one that we used at Jefferson.  While Jackie was laying on the table taking a break, Jim leaned into him and asked him a question.  Moments later Jackie said the word Dad! A very special and unforgettable moment for the boys.  We all cried.

Jackie didn’t say any other words for hours.  After dinner it was time for a shower.  Unlike the rolling PVC table that they used at Select Specialty, Jackie was hoisted into a waterproof wheelchair.  Out of curiosity and the need to learn I assisted.  This was a routine task for the nurse who had much tenure at Magee and it showed.  She knew what she was doing and she was a genuinely caring person.  After we were done we got Jackie back in bed.  He was not only exhausted from three PT sessions but also from getting out of bed to eat in his chair for lunch and dinner.  Before he fell asleep for the night, I felt the need for a hug….big surprise.  I leaned in and Jackie hugged me back.  I told him I loved him and was taken back when I heard the words I love you. I held the hug for as long as I could.  My boy is coming back.

Jackie spoke a couple more words before falling asleep for the night.  It was funny, at one point Jackie said something to Jim.  I was filling out some paperwork and Jackie spotted a bag of snacks across the room.  After Jim had him repeat the words Jackie said Vanilla Wafers.  We laughed, apparently the packaging looked similar to Vanilla Wafer bags.  God is good!

With each day that goes by it continues to be obvious that it takes a special person to be a nurse.  Thanks to all of you who have chosen this as your profession, especially Jackie’s Nana who has finally retired after many years of selfishly caring for others.

Magee at last

We started the morning with hopes that this would be the day we made it back to Magee. So as not to be disappointed, we mentally approached the day like any other day at the hospital. Jackie slept fairly well Thursday night so was waking up somewhat rested.

Julie from the OT/PT team came by at 8am to pick up Jackie and take him to the gym.  Minus the discomfort and frustration of wearing his helmet, Jackie seemed ready for the workout.  When we got to the gym, Kris and Beth were waiting for us and we headed straight to the bars for a stroll. With support from the therapists, Jackie made it down the short walkway twice.  PTL!  I can tell it is a struggle and most likely painful for him, but he seems determined to get moving again.  We continue to work on having Jackie release the ball to throw it.  After talking with the docs at Magee,  it is a basic instinct to hold on to objects, that is part of the reason he is not throwing the ball.  His brain will need to be retrained with this motor skill.  As motivation, we have told Jackie that as soon as he throws the ball, he can order a new pair of Oakley sunglasses and have them shipped here.  The therapists at Jefferson have also agreed to pitch in some funds when this happens.  Jackie is really trying and I know at some point will be looking good sporting his new shades.

We headed back to the room after the session and since his breakfast tray had already been delivered, we decided to try to have Jackie eat from the wheelchair.  The meal went very well with Jackie sitting up like he normally would eat, and then was hoisted back in bed soon after he was finished.

He rested for some of the morning and then proceeded to eat many ice chips.  I know the one thing Jackie really wants is to just drink a cold glass of water, but that is not something he is allowed to do.  Chewing and swallowing many ice chips is the closet he is going to get to satisfying that craving for now.

We kept watching the clock as we were told an ambulance would be there to pick up Jackie at 12:30pm.  Not long after that time we were on our way to Magee.  Jackie’s first ride from Danville took a little over 2.5 hours to get here.  The short mile trip from Jefferson to Magee was wonderful.  When we got here, everyone was ready for us.  We saw many different staffers each with their own specialties.  His evaluations guided next steps.  His mattress was switched out for one that would relieve the most pressure on his body, especially the boney spots that are unfortunately prominent all over his body.  He was even given special socks that help with heel protection.  He had his first puréed meal at Magee and made it to the clean plate club with his dessert being a cup of ice cubes.  The respiratory therapy team is already taking steps toward removing Jackie’s trach.  He started a small cap study before he went to bed and will continue the study over the weekend.  If he passes we can move on to the final steps for removal. The capping process basically closes off the trach airway and is a test to see if Jackie’s oxygenation levels stay where they need to with it closed.  It is also a gauge to see how he handles going back to the normal way of breathing through only his mouth and his nose.  So far so good, this is not an overnight process but we are heading in the right direction.  (That definitely deserves another PTL!)

Even though the regular therapy staff is off for the weekend, Jackie will still be evaluated by the PT, OT and ST teams tomorrow morning.  His new wheelchair is already in his room with special padding to protect his body.  Some of his personal items that were stored here for us have been put away in his drawers and tomorrow morning will most likely be the first time in a long time that he will be wearing something other than a hospital gown.

I cannot tell you how good it feels to finally be here again starting this new leg of the marathon with Jackie.  He will need to continue to be strong as the workouts will be challenging and exhausting.  But I know Jackie is up for it and we will keep positively pushing him in the right direction.

Once we get settled in at Magee, we should be getting a better feel for when it would be best for visitors.  From initial conversations with the staff, it looks like at the beginning Jackie will be exhausted during the week days and will need rest week nights.  Weekends may be the best time for visits, but we will need to make sure they are shorter in length and somewhat limited.  Please get in touch with either Jim or I first before making the trek to Philly. Some of his extended family have been waiting to see him for a while so may be making their visits first.

A special thanks goes out to all of the Jefferson staff for taking such good care of Jackie while we were there.  We have been so blessed in so many ways along this journey.  Please know all of your support and prayers are appreciated more than you will ever know.

Still at Jefferson

Unfortunately, things did not work out to go to Magee today.  The good news is that we are scheduled to go tomorrow sometime in the afternoon.  We had been given a heads up that this may happen, so we had mentally prepared  just in case.

Disappointment aside, we had a good day today.  We started out the day with a work out in the gym.  Jackie sat on the edge of a table that could be elevated to different heights. He went through a series of exercises and was elevated to a standing position. He was asked some OT related questions including card matching. When given three options Jackie immediately knew what year it was but was unsure of the month – understandable considering all he has been through.

Mealtime is still going well.  Jackie’s appetite seems to be increasing every day and his nutrition through his feeding tube has been reduced to nighttime only. PTL.  He is still on a puréed diet, but he just seems to be happy eating anything.   Something I hope his friends and fellow students take to heart when complaining about cafeteria or any food. We let him feed himself but monitor spoonful sizes and continue to check if he is swallowing properly.  A nurse and friend from the NICU stopped by with a frozen creamy mango treat which just hit the spot.  Jackie has been extremely thirsty. He started leaning to the left side of his bed and pointing to something.  His writing confirmed he wanted water.  He did this throughout the night. At one point he wrote water and then H2O underneath it, just so we would totally understand his request.  Our nurse showed  us a thickening powder we could use for water and then Jim gave it to Jackie. He drank the entire cup.   The consistency  of regular water is too thin for  Jackie  at this point.  To us it would taste horrible, to Jackie, who drinks water all the time, it was wonderful.

We were sitting in the room after a very late lunch when Leela showed up at the door. She is the Shelty therapy dog that visited us once before.  At the same time the OT/PT team stopped by and had some time to take Jackie to the gym for a second session. Jackie was moved to the wheelchair, he put on some gloves, and was able to pet Leela out in the hall on the way to the gym.  It was a wonderfully therapeutic moment.

Jackie sat on the same table at the gym and did some torso and neck exercises.  It is amazing how much stronger his neck has become just in the last three days.  We can’t thank the therapy teams enough for working with Jackie to get him as far along as possible before heading to Magee.

It has been 44 days since our first and only night at Magee and a cumulative total of 82 days in the hospital. To say the least, we are all ready for the next phase of recovery.  Even though this last hospital stay was a huge set back, Jackie is now much stronger than he was the first time we went to Magee. There is still much work ahead, but I feel Jackie is in a better condition now to handle it.

Thank you for praying for Jackie and for all the support you have shown.  It continues to fuel our spirits and keeps us pushing forward.

Waiting Confirmation

At this point we are still waiting for final confirmation and timing of when we will be heading to Magee.  If there is anything we have learned from this entire experience is to take things one day, one hour at a time and be willing to accept and adapt to any and all changes.

Jackie ended up not having a very restful night.  The most solid sleep he had was an hour and a half.  The rest of the night was just short cat naps.  Our docs stopped by and they thought everything looked good.  We talked about follow up visits and details in reference to Jackie’s shunt.  Jim and I continue to learn more about TBI every day.

OT/PT picked up Jackie early and we headed to the gym.  When we arrived there were not many patients there so it was more quiet than  it was yesterday. Several therapists worked with Jackie again to make him stand up. This time he was positioned behind a piece of equipment that looked like a large walker on steroids.  Jackie stood up behind it and it was elevated to match his height.  Once again with the help of several therapists  he took some steps – PTL!  Next up was the table.  They laid Jackie face down and made him hold up his neck by leaning on his elbows. Then he sat, assisted, on the side of the table until he was ready to get back in the wheelchair. As you could imagine he was exhausted so we put him back in bed and he took a nap.

We also had ST and focused on speaking since eating is going well on the puréed diet.  Ellen worked with Jackie on mouth movements.  She also had me sing to him in hopes he would join in with the simple words of the song, he didn’t. Then she had him mouth the words one through five and also count them out on his fingers.  He seems to be forming the words correctly, but no sound is coming out yet.  She also had him just try to say Ahhhh – and there it was a very clear Ahhhh sound spoken by Jackie.  It was music to my ears.  We were all so happy!

The rest of the day included some visits from Jefferson staffers that wanted to wish us well before heading off to Magee.  We also were fortunate to have Kristen as our nurse today.  She helped us get prepared for the move to Magee and also is tons of fun.  Jackie really enjoys her company.

Near the end of the day Jackie became very restless and as it is now very early on Thursday morning he did not sleep well once again.  Each day we are becoming more aware of the fact that TBI recovery is one that requires much patience, love and time.  We will get through this side by side with Jackie!

I know I say this all the time, but please appreciate the simple things like sitting up unassisted and saying hello.  Make the most out of every precious day and have fun where and whenever possible.

Thanks for all the love and support.

A date for Magee

Today we were told that we will be heading to Magee on Thursday! PTL!  We are excited beyond words and grateful that we will soon be moving on to the next phase of Jackie’s recovery.

It was a great day. Jackie had a good nights sleep and he continued to eat more and more with each meal. He is actually eating a large portion of the puréed meat and veggies as well as his sugary staples of ice cream and pudding.  For once his system seems to be starting to move on its own.  This alone is huge as we have struggled with this the entire time he has been in the hospital.

After a good breakfast, PT/OT stopped by and took Jackie to the gym.  We went with them not knowing what to expect.  Jackie had seen the hospital gym before, but was never an active participant.  They  wheeled him up to an apparatus that has holding bars on both sides.  It took several therapists, but they held him in an upright position, helped support his head and torso and also guided his feet.  It was the most beautiful thing to see.  Jackie was standing upright, using as much arm strength as he could muster and  was actually walking. PTL!  It was a miraculous moment and both Jim and I were overcome with tears.  It will be a while before Jackie is able to walk on his own, but I truly believe he now has hope that he will be getting better and not stuck in a hospital bed forever.  Jackie repeated the sequence of steps a second time but was too tired to make it a third.  At this point he was getting emotional and we knew he was most likely sore and exhausted.  We tried to tell him to think about when b-ball season started and that he just has to work through the initial pain and it will eventually get easier.  That seemed to make him feel better.  We all came back to the room and moved Jackie back in bed.

Not long after, ST came in.  We did a couple things to help Jackie speak, but still no words and not many sounds.  He has come a long way in reference to mouth movements, so Ellen believes it will just be a matter of time until he says something.

Just like at Geisinger we have met so many caring and loving people here at Jefferson. We feel incredibly blessed to have met everyone.  I’m sure the care Jackie  has received here has been a huge part in his recovery.

Jackie is set to go to the gym early Wednesday morning and so far his night has been a little restless.  He will need to get used to the long days of therapy that will be routine when we get to Magee.

We have one more full day to get ready.  Thanks for your continued positive thoughts and prayers.  They are working!

Anticipation

This looks like it may be the week we finally get to Magee.  PTL!  Our docs have given the approval to start working on the re-admission process.  Updated notes and reports need to be given to the Magee staff on Jackie’s PT,OT, ST and medical status as well as many other things that the hospital and case workers handle for us.  We just wait with anticipation for the green light to start another leg of Jackie’s journey to recovery.

Jackie had a good day.  He continues to enjoy eating ‘real’ food and is able to consume a little more each time.  So far, pureed bananas, chocolate pudding and thickened chocolate ice cream remain his favorites. Jim and I definitely work together as a team during meal time.  There are many things we have to watch and ensure happen with each bite of food.  We also have to make sure Jackie stays focused during  the entire meal.  As much as we would like to have fun, laughing could be detrimental to a proper swallow.

The dietitians have reviewed and set a new daily caloric intake for Jackie.  They now look at the calories he consumes during his meals and then adds that to the nutrition he is getting through his tube feeds.  Together they should match the number they are looking for.  Like in the past, it is not a perfect science.  Jackie continues to hit high residuals and we must turn off the tube feeds until his body is able to catch up with the absorption of what he has already consumed.

The OT/PT team worked with him today.  Even though his neck and head are still sore from the shunt surgery, he gave it his best shot.  They sat him on the side of the bed and worked on torso and neck strength.   He was then hoisted into the wheel chair and we decided to take him out for a quick taste of fresh air.  We wheeled him outside the entrance and even though the change of scenery and warm air were all positive, the noises of the city were too overwhelming.  We came back inside, took a quick trip to the walk bridge and then headed back in bed.

The rest of the day was low key for the most part.  Now that the lumbar drain is out, we are hoping to have his PT/OT session in the hospital gym tomorrow. Even though the sessions are hard work, his helmet seems to be what bothers him the most.  I’m looking forward to getting a more comfortable fitting helmet at Magee.  Jackie will need to have it on at all times when he is out of bed.

How ironic that Magee is located on Race St.  We are hoping that Jackie’s rehab there will mark the back half of his marathon.  Jackie has fought and made it through many tough miles and I’m sure there will be more hurdles he will have to face.  With continued love and support Jackie can make it to the finish line and I know we will all be cheering for him when he gets there.

This will be a short one because many of the moments we shared as a family and with Florent in your room, our new ‘home,’ were ones I will cherish forever but would also like to be all ours, just ours.

Saying I am proud of you and how far you’ve come over the last few months would be an understatement. You are so freaking incredible baby brother, seriously! The amount of speed bumps you’ve had to slowly maneuver over have been intense to say the least but you’ve managed to not only keep your sense of humor but that great smile of yours is coming back too. The little devious smirk, your laugh when things are kind of funny and you’re just laughing to be nice and pretend your big sis is good at telling jokes, the major laughs where we all join in fits of giggles for 5 minutes straight. All of these things seem so little to many people but to you and me and our close friends/family we know just how important and amazing they really are.

Thank you for all of the big bear hugs and patience when we are trying to figure out what you need or want some mornings. Thank you for helping me make mom feel special on Mother’s day and allowing us to have family moments again like old times. This weekend was incredible and filled with joy. It was one of those weekends no one could ever forget and years from now we will look back and smile just thinking about it.

You are so strong, passionate, determined, hilarious, stubborn and loved. Never forget that!

Love,

Sis

Mom’s day

I’m not sure how Mother’s day became a national observance.  I guess I could Google it, but it really doesn’t matter.  What is important is the fact that I was blessed to spend today with Jim and both of our children.  As Mom’s we nurture, cuddle, teach, feed, and follow a care routine for our children that is very intensive at first and then morphs into a unique path for each child. Much of life and what happens to our children is out of our hands.  We do the best we can each day and then get up and do it all over the next day, all out of love.

Today we celebrated all being together and it was wonderful.  Lindsay and I both received many hugs from Jackie that have more meaning now than ever before.  Jackie continues to eat a little more at each meal and is starting to make more sounds from his speaking valve. I am hoping these noises lead to words.

Communication is still a struggle.  Jackie is getting better at pointing out pain areas. He was also pointing at one corner of the room but we could not figure out what he wanted.  We gave him paper and he roughly spelled out water. He had been pointing at two water bottles sitting beside his bed that are used for trach/O2 use. Even though water is too thin of a liquid, he can eat ice chips.  He also wrote –  Wheres my pudding.  Granted, the penmanship is not good, but this is a great communication break through.  Florent thought maybe Jackie would like to type out words on a keyboard.  We had tried this once before and  again it seemed a little too overwhelming for Jackie.

We are looking forward to talking with our docs this morning to get a feel for when we may be able to head to Magee.

I hope your day had some memorable moments.  Keep giving the love, it will come back full circle in ways and forms you may never thought possible.

Thank you for your positive thoughts and prayers.