Hugs and stitches

Last night was a peaceful one for the most part, filled with long cat naps and not much restlessness. Jackie’s bath was first up for the day with the regular nursing routines to follow.

The Neuro docs stopped by and decided to hold off on putting in the shunt at least for now. The OR had been tentatively reserved for tomorrow. We are still hoping Jackie’s body will begin to regulate the extra fluid on its own. If not, surgery could still happen later this week.  A complication to this process is the fact that Jackie’s Lumbar drain continues to leak on and off. In fact more stitches had to be put in today to stop yet another leak.  The hope is to keep the drain in for a couple more days.  Talking to one of the residents, stitching the existing drain is better than pulling it out and inserting a new one.

In our opinion, Jackie’s neuro function is now back to where it was when we left Geisinger.  PTL. We have started to video our sessions with him since he will not do anything when the docs or nurses ask him.  This way we can show them.  Our nurse today asked Jackie for a thumbs up.  He immediately gave her a thumbs down.  I truly believe he is so sick of doing these elementary commands that he responded in a way that she would stop asking him questions.

Jim and I thought we would take the opportunity to work with Jackie while his neuro function was high.  We put on his speaking valve and worked on Jackie’s tongue strength.  We held a lollipop to his lips and he moved his tongue forward to lick it.  This was something he did just prior to leaving Geisinger.  Lenora  our ST from Geisinger would be proud of Jackie!  He also ate a couple ice chips.  We worked on getting Jackie to make some sounds, but were unsuccessful.  We also had Jackie work with a pen and paper.  This is definitely an area that will need some work, but some of his letters were legible.  He read a short sentence and acted on it and worked on numbers as well.  We also had Jackie laughing throughout the day.

The best part of the day was when I was sitting close to Jackie and he reached out one arm and touched me and then reached out the  other arm.  I jokingly asked if he wanted a hug and reached down and hugged him, the next thing I knew both of his arms were gently hugging me back.  I headed to the window out of his view and cried.  It has been a very long time since I’ve hugged my Jackie.

We just need to get over a hurdle this week and hopefully we will be headed back to Magee soon.

Thanks to all of you for your positive thoughts and prayers.  They will help heal Jackie and keep him strong.

A beautiful Easter

Jackie slept well the first half of the night and was a little restless in the early hours of the morning.  Five-thirty arrived quickly and it was time for a bath, a turn, morning meds and trach care.  Jackie is so glad trach care only occurs every 12 hours.  I don’t blame him.

There is a slice of sky that we can see from Jackie’s room window, between several very tall buildings.  Usually we can catch the sunrise.  Following Jackie’s bath this morning, Jim took a look outside and pointed out this morning’s view.  It was a beautiful sunrise and  lit the sky with shades of purple, pink and orange.  It was absolutely the perfect way to start our Easter day. Feeling good I started to sing some of my favorite Easter hymns which apparently was funny to the boys.  What resulted was two absolutely beautiful sights, an incredible sunrise and a smile on Jackie’s face.

Lindsay and Florent were still here which made the start of the day even that much better!  We celebrated Easter yesterday with Nana, John and Florent’s parents and today the celebration that we would usually have at my Mom and Dad’s house was moved to the cafe in the hospital.  We are so blessed and so appreciative of the support we feel and see from our families as well as our friends.  Even some of the nurses have extended their support to us in many different ways.  Thanks to all of you for renewing our faith and spirits every day.

The Neuro team stopped by and were pleased by what they saw.  PTL.  We should have more details on next steps tomorrow.

The sun is going to set soon on a day that is a celebration of faith.  It was a day full of beautiful moments, hugs and hope.

As I sit on the bus from Philly to DC I look around us and see many little things that before this all happened would have been a quick and easy heavy sigh of impatience. Now, I see so many things to laugh about ever being a big deal.

Being able to spend the entire weekend with you, mom and dad was incredible. I must admit while the bus pulled out of the parking lot a couple tears rolled down my face. So happy and grateful you are here with us but still going to miss you. Things are going great and you laughed all night long to old stories, my random comments or sound effects and we even all got to watch big bang theory episodes like old times. Things are good baby brother, so good.

We held hands, you reluctantly let me kiss your forehead and we talked about the future with hope and excitement.

You are definitely ready to join us again but we just have to give your body some more time to heal. With so many little things we could all complain about or find big road blocks in a day it is nice to say you taught me that those very little things are just that, little.

Happy Easter! I hope you have a restful night tonight. You are my hero, inspiration and best friend now and always.

Love you beyond words.
– Sis

Last night was a good night of rest for Jackie.  He went back to a long string of cat naps. Jim and I took our normal shifts.  We both are usually up by 5 or 5:30 when it is time for Jackie’s bath.  That typically tires him out and he takes another little nap.  The sun was streaming through his large rectangular window reaching all three of us with its warmth.  Jim was holding one of Jackie’s hands and I was holding the other.  It was a wonderfully peaceful and beautiful moment in time.

We had some visits from our team of neurosurgeons throughout the morning.  The plan is to stay the course and not drain any spinal fluid today. We also had some family visitors today including Lindsay and Florent. Jackie was so happy to see and spend time with them.  It also gave Jim and I a chance to sneak in an extra nap.

We felt Jackie’s neuro function was good today.  He laughed and smiled very often this morning.  We were seeing signs of the same Jackie that we saw prior to leaving Geisinger.  PTL. As the night progressed, the activity of the day caused Jackie to get tired and less responsive.  That was to be expected.

In the early evening Jackie was taken down for a CAT scan.  We are not sure if another is scheduled for tomorrow or Monday.  The images will show the placement and amount of fluid retention, if any.

Tomorrow brings a new day of hope and healing just as it did so many years ago.  Enjoy your Easter, spend time with your family and friends and be thankful for the little things that add up to everyday blessings that are far too often taken for granted.

As I was starting to write this post, I was thinking about what I could title it. My mind kept coming back to Good Friday, after all that is in fact what day it is.  This day has many different meanings for all of you depending on your religious preference.  It was an extremely difficult day for the followers of Jesus which ultimately lead to a day of celebration and joy – Easter Sunday.  I struggled today, Good Friday, with keeping my positivity going due to yet another small set back.  But after talking with my Mom, I realized I need to keep my faith strong no matter what and take each day as it comes. I am still very hopeful for the future and know that we are going to eventually get to a day of celebration and joy!

Jackie’s night last night was not as restful as past nights.  We once again had to give him something to get his system moving which caused him some discomfort.

We met with our docs early this morning and confirmed that we would stop draining spinal fluid today through the weekend.  We will reaccess on Monday and confirm next steps.

While talking with the nurse who specializes in skin care, we noticed that Jackie’s Lumbar drain was leaking.  We had the docs take a look and since it was necessary to keep it in, they put in a couple stitches to stop the leakage at the insertion site.  We will now need to be even more vigilant with checks to ensure the stitches are working and the leaking has stopped.  Just another set back that needs to be taken in stride.  Once again, we will need to go day by day until we reach the day that the drain can be removed.

Because of the leakage, we felt it best to pull Jackie out of his PT session today.  To say this was a  disappointment would be an understatement.  One highlight to the day was Visa.  Visa is a mix between a Golden Retriever and Black lab and one of the therapy dogs at the hospital.  Due to Jackie’s infection,  Visa was not allowed to come into the room so the plan was to have Jackie in a wheel chair so he could get close as possible to her by wheeling him to the door.   Instead we wheeled his bed as close to the door as possible.  Visa’s owner held her up on her hind legs so Jackie could see her.  He instantly teared up and then smiled.  It was a wonderful moment.  We can’t wait for the reunion of Jackie with our Golden Retriever.

I hope this weekend helps all of you renew your faith in whatever you believe.  Jackie continues to stay strong and we continue to pray for healing.  Thanks for your positive thoughts and prayers.

Jackie slept on and off the majority of the night. The string of cat naps seemed to last longer in duration than the previous night.  We are hoping this trend continues.

We have tried to start introducing a routine in the morning.  First up is the visit from the docs around 6am.  Our doc was heading into surgery so the visit was quick and confirmed we were to stay the course and continue to drain spinal fluid each hour today.  Next up was  Sports Center on ESPN which includes the Top Ten sports highlights from the previous day.   In most cases Jackie is positioned in bed in a way that he can see the TV.  If he isn’t, we can tell he is listening to the sportscast.  We also have started putting his speaking valve on every morning.  Even if we don’t work on any speech or swallowing exercises, it is good for him to get used to the sensation of the valve.  It allows air to come in but not out.  This is all part of the process to get him ready for the trach to be removed.  We are hoping to reach this milestone when we get back to Magee.

We have also introduced the use of the iPad.  We flip through pictures in hopes of refreshing his memory.  His motor skills are not quite refined enough to move the screen from image to image, but he is trying.  There is also a simple game app that Jackie can play to a certain point.  He moves and jumps a small figure forward and over obstacles to get to the finish line.  He doesn’t play this long as we feel he gets frustrated, but it seems like something he enjoys.  This is nothing compared to the XBox games he used to play, but you have to start somewhere.  Jim also downloaded a James Bond movie to watch.  They are watching it for small periods of time.

A PT/OT session was next.  Neck and core strength exercises were worked on at bedside.  It is amazing, even with all of Jackie’s weight loss, which is significant, he still has great strength in his arms.  He continually moves his legs, which can pose challenges at times especially during some of the exercises, but this is a good problem to have!  He was then moved to the chair. He had a different wheel chair today which provided better neck support.  The team decided to take him for a little ride.  We wheeled him through the physical therapy gym area which is just down the hallway on the same floor that we are on, then wheeled him a couple more feet from the gym to a glassed in walkway.  It gave Jackie the chance to see the city and I truly believe it gave him hope that he was starting to get better after being in a hospital bed for so long.  PTL.  For those of you who know me, I admit I am somewhat of a germ-a-phobe. Our venture out of Jackie’s room today included zero close interaction with people and was about the same distance from his room as any of the trips for a CAT scan.  The big difference was that he was sitting up vs laying flat. After returning to the room he stayed in the chair for a while before he was moved back to bed.  He was exhausted.

We did not see the ST team, hopefully the will stop by tomorrow.

I have a feeling the Lumbar drain will be staying in for a couple more days.  All of us including the nurses and OT/PT staff will be glad when it can be removed.  We have to constantly ensure the site where the drain is inserted is not leaking, stays clean and that the drain tubing is not pulled out of place.

We keep testing that virtue of patience and pray that we will soon be out  of the hospital and back at Magee.  Our docs, nursing and rehab staff at Jefferson have been great and I’m sure they all wish we were out of here as well.

The next couple days will determine the length of time we stay at Jefferson.  Thanks for your prayers for healing, strength and patience.

Getting back to baby steps…

Jackie’s night last night was a little more restless than normal.  He still was able to get some sleep which was good as today was a busy but good day.

This morning the docs stopped by early as usual and examined Jackie.  It looks like we may be in the hospital until mid next week or later.  Tentatively they plan to stop draining spinal  fluid on Friday.  Then we will wait to see how Jackie’s body responds on its own to the extra fluid in his brain.   After a certain wait period Jackie may need to go back in the OR for a shunt.  We will cross that bridge when we get there.  Day by day….

To our surprise and excitement, the ST team stopped by.  Jackie ate a couple ice cubes and we also worked on verbal commands.  Jackie is not responding well for some of the specialty teams and docs.  We are not sure if he is still in a little fog from the fluid retention or if he is just frustrated and opts not to respond.  Either way he still responds to us.  We would say he is about 75-80% of where his neuro function was at Geisinger.  The ST team asked that Jim and I continue to work with Jackie, so tonight we had him move his tongue out to lick a lollipop.  Lenora showed us how to do this at Geisinger.  We were able to get Jackie to lick his lips and rub the front part of his tongue against the lollipop.  I know this doesn’t sound like a big deal, but it truly is!

The PT team also worked with Jackie today.  He did leg squats while laying down on the gravity table and then sat in the wheelchair.  He was out of bed for a little over 3 hours.  Another positive part of the day.  He was very tired so we got him back in bed.

Our nurse today was persistent and wanted to get a thumbs up from Jackie.  By the end of her shift he had given her three and the last one included a smile.

Another notable baby step is in relation to Jackie’s nutrition.  We are now up to goal!  PTL

Your positive thoughts and prayers are being felt in Philly.  Thank you for continuing to send them Jackie’s way as we head into a couple days of uncertainty.

Jackie had another good night.  He never sleeps through, but he is having longer nap periods with less time in between them.  He is also staying awake more during the day.  All signs of getting back to some sort of normal, if that is possible in a hospital.

The Neurosurg team stopped by early this morning and decided to stay the course for yet another day.  Every hour spinal fluid was once again drained from Jackie’s Lumbar drain.  Tomorrow morning we will meet with them again for next steps.

Jackie had another PT session today.  As planned they worked on his torso and neck strength.  He then sat in the PT wheelchair for about 2.5 hours.  During that time he had to get a new bed as the bed alarm malfunctioned.  Even though this is not a concern with Jackie, because he cannot get out of bed on his own, it is hospital policy so the change was necessary.  We also had a bed malfunction at Geisinger.  I think that is a sign that it is time to break this joint.

We were disappointed as the ST team was unable to meet with Jackie again today.  We will put in a request early tomorrow morning to make sure we can see them.

Jackie seemed a little down today.  I can’t blame him.  I can’t even imagine what it feels like to be lying there, hearing all the medical jargon about major things relating to you and not being able to talk.  Somehow his strength and perseverance are getting him through.  He lightened up a little bit at the end of the day.  His Grandma and Grandpa and his Nana were here.  Jackie enjoyed playing with a nerf basketball and hoop that Gma and Gpa found for him.  Nana was telling him funny stories about the family pug that Jim grew up with and it actually brought a smile that turned into a silent laugh.  That made us all feel better.  We also FaceTimed Lindsay and Florent.  Another smile erupted during the call.  Don’t take smiles or laughter for granted.  In fact, smile as much as possible and laugh until it hurts!

We now have just a small glimpse of what some parents are going through who have children with long term illness.  These times call on strength that we never thought we had and faith that goes way deeper than it ever has before.

Thank you for running along side us and sending your prayers and positive thoughts to Jackie.

Good start to the week…

Jackie had another good night.  He took a bunch of long cat naps so we believe he is finally getting his days and nights straight.  Since we prepared ourselves for the transition to the new nursing unit, we feel it went smoothly.  After all, these nurses still have intensive care training.  So far our nurses have been young but very good.

As expected our Neurosurgeon stopped in early this morning.  He was happy with the progress Jackie was making and decided to stay the course and continue to drain spinal fluid each hour.  I am sure we will get another update on next steps tomorrow morning.

Since it is Monday, we were ready for a busy day.  Jim and I worked with Jackie in the morning.  We put his speaking valve on his trach and worked with him on making sounds.  We did not hear anything today, but we know he was trying.  We also gave him a couple ice chips and cold water swabs to work on his swallowing.  We were glad we did because ST did not make it up to see us today.

Jackie did have a very good PT session.  They moved him to the gravity table and with some help did some leg squats and also weight bearing exercises. They also held him in the standing position and by grasping on to two people he was able to hold himself steady using his arm strength.  The PT team had to hold his head up the entire time, but we will take baby steps any day.  As you can imagine, just these simple exercises exhausted him. We decided it was best to put him back in bed vs putting him into the chair.  Tomorrow the plan is to work on torso and neck exercises and hopefully spend some time in the chair.

Not too long after we got him back in bed, someone from neurosurgery was there to take out his staples on the left side of his head.  These staples were from his last surgery at Geisinger.  Hopefully at least half of his head should stop itching for now.

One other highlight from today is that we are almost at his goal nutrition level.  This is a big win as Jackie really needs to start gaining some weight!  We remain vigilant at turns and doing body checks to avoid bed sores.

As you know from earlier posts, TBI is complex and unpredictable.  We are celebrating today for all of its small victories and will continue to move forward day by day.  PTL

Transition Number 5

Jackie’s night was fairly peaceful.  He took cat naps throughout the night.  Like clockwork, when 3am hit, the blood lab tech came into the room. After three long and painful stick attempts, I asked him to stop.  I can’t tell you how frustrating and painful it is for us to watch this process every morning.

Every hour since 7:30am, spinal fluid has been drained from Jackie’s Lumbar drain.  This will continue throughout the night.  Our neurosurgeon should be stopping by first thing  tomorrow  to  let us know next steps.  I will be glad when this process is over and the Lumbar drain is removed. Ultimately we are testing Jackie’s body’s ability to process extra spinal fluid.  Our bodies do this naturally, Jackie’s head trauma has created extra fluid that we are hoping will take care of itself.  This week will be telling and will help the docs determine our next steps.

Since Jackie’s vitals have been stable, PTL, we were released from the ICU to the Intermediate ICU.  We are literally right down the hall from where we were.  The patient to nurse ratio is a little higher but Jackie will not receive the constant vital sign checks.  Transitions always come with questions and apprehension, but we are hoping this one will be smooth.

Hard to believe this is the start of our 8th week in the hospital, with less than 24 hours spent at Magee.  Jim and I are starting to feel like we are part of the nursing staff.  I’m sure many of the nurses wish we were not here, but since Jackie can’t talk, it is so important that we are his voice.

Thank you for caring about Jackie, praying for Jackie and for going through this journey with him.  He will be amazed by those of you who will be right there with him, cheering him over the finish line!