Meaningful meal trays

It is amazing how something so unexciting and routine for many can represent a huge turning point for others.  For weeks as meal trays were delivered to the rooms around us, Jackie’s room delivery consisted of juice box sized containers of liquid nutrition created for feeding tubes.  Many times the staff would peek their heads in the room and ask if there were any meal trays to be collected and we always had to say no.  Normalcy is now being delivered to Jackie’s room three times a day and it feels and tastes great even if it is puréed.

Despite some nausea after eating his first meal, Jackie is adjusting to his three meal trays a day.  Jim and I have to stay very focused while Jackie is eating and apply everything we have learned from Jackie’s speech therapy sessions to ensure he is moving the food around in his mouth properly and swallowing correctly.  Since the trach is still in place, aspiration is a possibility and one that can be avoided if we ensure the eating environment and coaching are correct.  I like to joke and I tell everyone that sugar is my favorite food group.  Jackie is following suit as he is consuming more pudding and thickened ice cream, yes there is such a thing, than the puréed meat and veggies.

Overall, today was a good day.  Jackie enjoyed special visitors including Lindsay and Florent.  Lindsay enjoyed her big hug from her brother and actually was able to get more than one.  Lindsay and I also got the chance to sneak away for a short while to have some girl time – it was wonderful.

We are hoping to get Jackie out into the chair tomorrow as the pain from his surgery should not be as great. Kristen stopped in today even though Jackie was not her patient.  She was the nurse that had him snapping to the beat of the music.  She told him he needs to start shrugging his shoulders as well, and he did!  Then he used the sign language to say I have my eye on you.  We all laughed.

We have learned many things along this marathon to Jackie’s recovery.  The one thing that continues to hold true is the realization of how good our lives are and how we take so many things for granted. Moving our tongues, talking, breathing without a blue tube attached to our necks, rolling over in bed whenever we feel like it, turning our heads and holding them up, eating food, and even just being able to throw a ball.  Rehab should help Jackie re-learn many of these ‘givens’ in all of our lives and he will be working very hard to get them back.  When you wake up every morning, be grateful for the ‘givens’ you take for granted every single day.

Happy Mothers Day to all the Mom’s reading the blog.  You are very special and deserve some hugs today!! A special thanks to my Mom and Jim’s Mom for all of their love and support.  We ae very blessed that you are part of our lives.

With the help of pain meds, Jackie had a fairly peaceful night.  He woke up and once again cried.  We reassured him that the surgery was over, it went well and he was ok.  We asked if he had any pain and he pointed to his neck.

Our Neuro doc stopped in this morning and confirmed that the surgery went well.  He said that pain in the neck area is expected but will go away.  He is going to keep an eye on his recovery the next couple days.

Jackie slept for a little bit and then we asked him if he wanted ice or pudding.  He did and ate an entire cup of chocolate pudding and many ice chips. He then brushed his teeth and finished up his oral care.  He is pushing to get back to normal.  We love it – PTL.

PT and OT came in later this morning and we decided that we would just do a bedside session based on Jackie’s pain.  Jackie did range of motion exercises and then moved on to cards.  He started with simple identification of red vs black cards and by the end of the session Jackie was easily giving a thumbs up to the cards that were red and had even numbers.  He ended the session knocking a large balloon in the air.  His left side is not near as strong as the right so that will be a focus for Magee.

After another dose of pain med Jackie took a nap and then headed down to radiology. We met Ellen, ST, there and were able to watch the swallow test from a control booth.  He passed most of the tests and is now able to be on a diet of pureed foods and nectar thick liquids.  He will be set up on a hospital diet and can order what he wants to eat each day.  PTL!  We still have to have him eat slow as the trach is still in, but this is a huge step toward being able to get his trach removed.  He will also still get nutrition through his feeder tube, but based on what he eats, the amount should be able to be lowered.

We know there is a long road ahead and many miles to go, but today gives us hope that we will definitely get there one day, one stride at a time.

Thanks for the positive thoughts and prayers you sent our way yesterday.  So appreciated and felt.

Surgery

Jackie’s night continued to be restless.  We held off on his bath until 9am.  This seemed to settle him and we had a low key morning watching ESPN and an old movie with Bill Murray.  Laughter is good medicine so a funny movie was appropriate for this morning.  We also lowered the hoisting device above Jackie’s bed and played some hoops.

We did not schedule PT or ST for today.  I forgot to mention something that happened yesterday morning. Prior to when ST was in the room I was on a hunt for chocolate pudding.  It seems to be the flavor of choice as all of the surrounding nursing stations have plenty of vanilla but not chocolate. While I was off raiding fridges, Jim and Jackie’s nurse Kristen were working with Jackie on sounds.  Jim had just given Jackie an ice chip and then asked him to open his mouth and say Ahhh.  Very softly, he verbalized Ahhh twice.  It was a huge baby step toward communication.  He has not made any additional sounds since then.

It was about 1:30pm when we got called down to the pre-op area.  We stayed there with Jackie until it was time to wheel him back into the OR.

We got word that the surgery went as planned and he was being sent for a CAT scan and an X-ray to confirm placement of the shunt.

Jackie got back to his room a little after 8pm.  He is still very sleepy.  We plan to give him some pain meds throughout the night so he can rest comfortably.  The Lumbar drain is out!!

Will give more updates tomorrow.  Thanks for all of your prayers.

Tears and Toughness

Jackie did not have as good a night as he has been. He had a decent amount of sleep, just not as restful as in nights past.  When he woke up this morning he looked at Jim and I and started to cry.  He is more aware now than ever before, so I’m sure he is processing all the  medical conversions that he hears and has pieced things together.  We continually reassure him that he is through the toughest surgeries, is doing great and that he will be ok.

Our Neurosurgery team stopped by and confirmed that surgery is scheduled for early Thursday afternoon.  They plan to insert a shunt to help Jackie’s body drain the excess fluid from his brain.  This has been a constant struggle from the beginning and we have given Jackie’s body enough time to do this on its own and it hasn’t.  Adjustments to the amount of fluid drained by the shunt may need to be made.  Our Neuro docs will watch this even after we are released to go to Magee.

In preparation for surgery Jackie had a CAT scan and a chest X-ray completed.

The morning continued with the boys ESPN fix.  I must admit, I like watching it as well.  We then put Jackie’s speaking valve on and got to work.  Ellen, ST, stopped by after we had started and as a whole Jackie ended up eating almost the entire cup of pudding, ate many ice chips and even took his first sips of water and apple juice since the end of February.  PTL. ST scheduled Jackie for a swallow test on Friday.  He had a similar test at Geisinger, but since it has been a while ST felt it best to repeat it.

Early in the afternoon the PT team worked with Jackie.  They moved him from bed to the gravity table and did some stretching exercises.  They also utilized his nerf basketball net suspended from the hoisting device to help make the stretching more interesting.  We were unable to get Jackie to throw the ball again today.

We finished up the night with some ice chips and Skyping with Lindsay and Florent. It is now early in the morning on Thursday and Jackie has been restless all night.  His back seems to be bothering him and his head is an endless distraction that constantly itches.  I’m not sure if his pending surgery is also on his mind.  It will be so nice to be out of the hospital and in an environment where sleeping is more comfortable for him.

Jackie is hanging tough.  I can’t imagine going through everything he has endured and faces in the future.  Thanks for sending your positive thoughts and prayers to Jackie as he continues to tackle each day with determination and strength.

Positive baby steps continue

Jackie slept on and off the majority of the night.  We completed the morning routines and saw our Neuro docs.  We will keep staying the course and will review further surgery details with them tomorrow.

Days that we can get Jackie to smile or laugh are always good ones.  Today was one of those days.  He ate small spoonfuls of pudding twice today and also enjoyed ice chips.  I can only imagine how good the ice feels in his throat and how normal eating the pudding must make home feel. PTL

He had PT today and did some stretches as well as took a ride to the walk bridge in the wheelchair.  When we got back to the room, Jackie was not interested in staying in the wheelchair so we moved him back to bed.  I truly believe the Lumbar drain is causing some discomfort.

We had a visit from a different therapy dog today.  She was an 8 year old Sheltie who just passed her therapy dog training a year ago.  She was small and sweet.  Her owner was able to pick her up so Jackie could get a close view from his hospital bed.  I wish he could touch the dogs, but the infection still has him under room restrictions.

We have been working with Jackie to throw balls.  He squeezes and moves them from hand to hand and will release the ball into our hands, but hasn’t thrown them.   Today during PT at the walk bridge we swear he threw it but could not get him to do it again.

All in all it was another good day.  We saw the Rehab docs and they will continue to check in on us to ensure Jackie gets back to Magee at the right time.  It cannot be soon enough as we are so ready to leave the hospital.

The word appreciation does not come close to letting you know how much your love and support means to us.  Thank you.

Back on track

Jackie slept better last night than any night we can remember.  He had catnaps, but they were long with not much awake time in between. We completed all the morning routines and saw our docs.  We will continue to stick with the plan for surgery later in the week and have slightly reduced the amount of spinal fluid that is being drained hourly.

While watching our morning fix of SportsCenter on ESPN, we saw a story on Charlotte Brown, a blind high school pole vaulter from Texas, who has succeeded on and off the track.  It was truly inspirational and hit home as it was someone around Jackie’s age who has overcome a physical challenge.  The story was done by Melissa Isaacson on Apr 23, 2014.  If you have time search for the story on ESPN.  The reason I bring this up is because after watching the story I looked at Jackie and said that it almost made me cry.  Immediately Jackie cried, silently but hard.  It was the first time we saw this emotion and made it more difficult for me to hold it together emotionally.  I truly believe he is becoming aware of the severity of his condition and is trying to deal with it.

We continue to work with Jackie on having him complete his mouth care. Each day he seems to be using his tongue a little more.  PTL.  I know this seems like such a small thing but is actually a huge step toward recovery.

We were listening to some of his music and Kristin his nurse and I felt the need to do some small dance moves.  Kristin had a great idea and had Jackie snap to the beat.  It was awesome! Later in the afternoon I played my uke and we all jammed again.

We continue to redirect Jackie’s hand movements 24/7.  He is quick and strong and within a second can have his hand on his head.  Even though it must itch so bad, he cannot touch it.  He also continues to grab for his trach, IVs, etc.  It creates very little down time for us but I mentioned this before, is a good thing as he is thinking and moving!  He has started to pull off the O2 tubing connected to his trach.  The O2 is set at the lowest level and basically provides humidified room air to his trach.  We joke and say we are at an Oxygen bar and he points the tubing at each of us for a shot of O2.  It makes all of us laugh and helps keep things positive.

Jackie’s PT session was probably the longest to date and he worked really hard.  Prior to the start of the session Kris asked Jackie if his head and his back hurt.  He confirmed that they did with two thumbs up. He also pointed to the Lumbar drain as the source of the pain in his back.  It is important for the therapists to know this when working with him.  Kris first worked on some tight muscles in his left leg while in bed.  Then they sat him up and continued to work on his head and neck muscles.  This may not sound like much, but even sitting on the side of the bed with support is exhausting for Jackie, especially since he still cannot hold up his head.  The session continued and he was hoisted into the wheelchair.  We took him to the walk bridge again and after a short time he was ready to head back to bed.

While on our walk and several times in bed I reached in for a hug.  Every time Jackie’s right arm reached around me and he rubbed my back.  I could stay in those moments forever.

We will not have an official speech session until Wednesday, so Jim and I continue to work with him.  After eating some spoonfuls of pudding and ice chips, we thought we heard Jackie vocalize an mmm sound.  Another thing that seems almost insignificant but in actuality huge in terms of progress.

Having a child suffer a critical injury is hard, watching them fight through pain and frustration is also hard.  Staying positive, trying to make things fun and focusing day by day is key.  As much as this is taking quality time for Jim and I to a whole new level, I don’t know what I would do without him.  I think we help level set each other and provide support as well.  It will be so nice to have our family of four together this coming weekend.  We are so excited to see Lindsay and of course Florent.

Each day celebrate the little things, try to have fun whenever possible and hug often. Thank you for continually keeping Jackie in your thoughts and prayers.

Down day

Jackie’s night started out restless but ended restful.  I think this could be why he was not very interested in doing things today.  He may be tired from yesterday or even just a little down.

The morning routines were completed and the doc visit went well. We are staying the course and still looking at surgery sometime later next week.

Jackie enjoyed some pudding and ice chips today.  We are creatively trying to find different ways to play with his stress and other miscellaneous balls.  Jim came up with the idea to turn a large empty sanitizing wipe container into a type of net or target.  We still have not seen Jackie throw a ball.  He can release it from his hands, but not throw it. This will come with time.

We also watched some TV.  Jackie was not interested in doing anything else like working on the iPad or playing Connect Four.  By communicating with him through hand signs, we determined that his back was hurting him.  He just needs to keep The Lumbar drain in for a couple more days.

Tomorrow is Monday and will prove to be  a very busy day. It was probably a good thing that today was a down day.  Jackie will need strength for the upcoming week.

Your positive thoughts and prayers for Jackie are felt and appreciated.

Day by day turns into month by month…

As we take each day one at a time it is amazing how a calendar reference shows that the days have turned into months. Jackie has now been at Jefferson for 1 month.  Hard to believe.

Jackie’s night was fairly peaceful with only a couple interruptions.   We tried to keep him up most of the day today so he would be tired tonight.  Since it is the weekend and our specialty teams are off,  Jim and I worked with Jackie on a bunch of things.

We worked with Jackie on teeth and tongue brushing, mouth suctioning and overall tongue movement.  He is making great strides in this area!  Lenora if you are reading you would be so proud!  Jackie also ate pudding and had some ice chips.

We played ball with Jackie and worked on his backboard shot with his nerf set.  We used some apps on the iPad and watched some TV.  Jackie’s attention span is not long so we try different things and know that with time he will be able to focus for longer periods of time.  Our goal is to keep getting him as ready as we can for rehab.

Jackie and Jim are watching the Phllies right now as a thunder and lightning storm is in full force outside the window.

We Skyped with Lindsay and Florent tonight.  It is so nice for all three of us to see and talk with them.  We are so excited for their visit next weekend.  Lindsay and I plan to sneak away for a short period of time and let the boys in charge of Jackie – a scary thought.  Jackie will love it! It has been a while since just Lindsay and I have spent time together.  It will be a wonderful Mother’s day weekend!

Make the most of your days. Don’t put the important stuff off. You too will find that the days you were going to do something will eventually turn into months of never getting it done.

I haven’t said this for a couple of my posts but please know how very blessed we feel to have all of you in our lives. There is no way we could be giving Jackie 100% of our time without you.

Thank you!

Consistent Progress

Jackie’s night was a little restless.   I think he was feeling uncomfortable as we are working on getting his system moving again.

Today we had visits from many specialty docs. Everyone feels Jackie is making great progress.  PTL. The Infectious Disease docs feel that if Jackie continues with positive test results, he should be cleared for surgery early next week.  At this point, we believe he will be getting a shunt, but know by now to just take things one day at a time.

The docs are still draining spinal fluid once an hour from his Lumbar Drain.  This will most likely continue until we get closer to his surgery.

With the Lumbar Drain in mind, we decided to just move Jackie to his chair and take a short ride to the glassed-in walk way for his PT session.  Getting out of the room would allow the hospital staff to fix a broken light above Jackie ‘s bed.  The trip did not last very long as Jackie tired out quickly.  When asked if he wanted to stay in the chair or go to bed, he gave a thumbs up to go to bed.  The lift that was fixed yesterday now needed repair again so we had to move to an alternate solution to get Jackie back in bed.

Jackie took a cat nap after his PT session and woke up ready for speech.  He ate chocolate pudding again and enjoyed every bite.  He also learned some basic sign language to try to help us communicate with him better until he can talk.

Our furry friend Visa stopped by again today.  Due to Jackie’s infection the therapy dogs cannot come in the room.  We wheeled his bed close to the door and turned him a little to the side so could get a close look.  I must admit, seeing Visa was good therapy for me as well.

Today was a sad day as Jim took the Septa train to attend a funeral to say goodbye to a dear family friend, Mrs. Lynch.  Her son, who passed away when he was 16, was Jim’s best friend growing up. Our Jackie is his namesake.  Trudy, we will miss you but are glad you are finally united with your Jackie once again.

Embrace life, be kind, celebrate the small stuff every day.

Booted out of ICU

As much as we would have liked to stay in the larger ICU room with a smaller patient to nurse ratio, it was time to move back to the Intermediate Intensive Care Unit.  All a good sign that Jackie is getting back on track and doing better.  We are still in the hallway just outside the NICU and are actually in the room right next door to the one we were before.  We have the same view of a beautiful old brick apartment building that used to be a hotel at one time. We now have the big window back and this time have a cushion on the window seat.  Even though it is narrow, Jim managed to take some of is nap on it last night without falling off.  Despite the move later in the night, Jackie managed to get some rest.

Morning routines and docs visits happened like clockwork and we were ready to start a new day in the new digs.  We spent part of the morning organizing the room as space is limited.  We listened to some of Jackie’s music and just chilled, enjoying some sun that was coming through the window, a welcome sight after the last two days of April showers.

We knew ST would not be ale to come today, so we worked with Jackie to complete his mouth care.

PT/OT consisted of sitting on the side of the bed and working on core strength.  He also worked on holding himself in a sitting position by using his arm strength.  The lift system needed repair, so Jackie had a longer than normal bedside workout.  Once fixed, Jackie was hoisted into the wheelchair and we took him to the glassed- in walk bridge again.  Just getting out of his room and out of bed is such a wonderful thing.  We wheeled him into the sunshine and he propped his leg on the metal railing.  Albeit a small sign but one that tells me the old Jackie is in there just waiting to break out of the body that has imprisoned him for such a long time.

Jackie was exhausted from the pre-workout and ride and gave us the thumbs up that he wanted to get back in bed vs sit in the chair for a while.

A highlight of the day was when Jim looked at Jackie and said, “I have my eyes on you.” When he said this he pointed two fingers at his eyes and one back at Jackie.  Almost instantaneously, Jackie responded back with pointing two fingers at his eyes and one back at Jim.  We laughed so hard.  Each day we are seeing more small glimpses of our Jackie coming back to life.

Nana and John were here today and the girls and guys took turns taking a quick lunch break down in the hospital cafeteria.  While Nana and I were eating she mentioned how much we take our brains, which control everything, for granted.  Jim and I see the reality of TBI every day and its impact on every single part of the body and it’s functions.

Take care of your brain, work it hard but give it rest.  When injured or stressed even licking your lips can be a monumental task.