There is a larger window in Jackie’s new room.  This morning the sun is shining through, kissing his face with warmth and light.  The start of a new day is upon us.

Jim’s night shift report was a fairly good one.  Jackie did cough on and off throughout the night so consistent sleep is non-existent.  Jim is taking naps when he can to catch up on some rest.  It will soon be time for me to take a turn overnight.

We talked with the doc already this morning and Jackie’s blood work is looking better.  Great news! His infection is starting to heal around the feeding tube, it may take a couple of days until it is completely cleared up.

It seems as though Jackie is moving a little bit more than he did before.  When Lindsay was holding his hand it appeared that he intentionally was rubbing her hand back with his thumb.  I just know he could tell whose hand was clutching his.

The plan is to start up his nutritional feedings again today through his feeding tube.  They will start slow and go from there.

I hope the sun is shining where you live today.  Feel the warmth and make it a good day.  Will post later tonight.

As always, thanks for your prayers and support!

A day of recovery.  For the most part, Jackie had a fairly peaceful day.  He has been through so much lately, I think his body just needed a day of rest.

As with any day, there are always things that happen, today at least they were minor compared to other days.

Jackie’s PIC line was removed.  This is good because leaving it in would just create another source for infection.  They put a regular IV in his arm.

The trauma team stopped by to check on the infected area near his feeding tube.  He is on IV antibiotics to help heal the infection.

His coughing due to the trach is still hard for me to get used to.  I am told he will most likely have it in place for a while.  I will need to find inner strength to get through this period of his recovery.

When talking with the doc today she suggested taking things one week at a time vs one day at a time as we should always expect a mix of good and bad days within each week.

Patience, strength, love and faith will keep us heading in the right direction.

Thanks for reading the blog, caring about Jackie and showering us with support.

Jim once again pulled the night shift with Jackie.  At midnight Lindsay and I headed over to a hotel that is literally a 3 minute walk from the hospital.  We are so thankful to be staying there since it is so close to Jackie.

Jim said Jackie finally had a good night.  We believe there are very tiny signs that his body is finally starting to come out of the fog. Right before Lindsay and I headed over to the hotel we swear he was trying to open his left eye.

I can honestly say I do not believe I will ever take anything for granted again. Anyone  reading this who has been in a similar situation will most likely agree.  It is crazy how things can change in an instant.  I know I keep saying this, but enjoy the small things in your life and be thankful for your blessings.

We are continuously touched by the outpouring of love and support that is coming to us in so many ways.  Please know that we appreciate it all.

Keep the positive thoughts and prayers coming.  I’ll post again tonight.

It has been a long day.  All of the days have been long.  I’ve never run a marathon, but I imagine this would be the part of the race where you have been running hard for a couple miles and realize even though you are tired, you have many more miles to travel to get to the finish line.  There is no question we can do this, we just need to focus on each days milestones and not all the days ahead of us.

It has been several hours since Jackie returned from the OR.  He still has his coughing episodes, but besides that he seems to be resting comfortably.  In order for the adjusted peg to heal properly, he cannot have nutrients for 2 days.  Some of his meds are also on hold.  We are hoping the weekend will recharge Jackie’s body so we are up and running again for the start of the week.

Focusing on the ‘now’ is not a bad idea for everyone.  Seize the day and count your blessings.  We have.

I’m sitting in Jackie’s new room beside his bed just gazing at my handsome son, wondering what he is thinking or dreaming as he sleeps.  I hope he hears our soft voices and knows we are here with him every step of the way.

Last night and today have brought on some new challenges that we are working to resolve.

Jackie did not get much rest overnight as he got sick many times. Our goal this morning was to work with the docs to figure out the cause of his nausea and fix it.

I wrote yesterday about the watch around his peg/feeder tube.  After closer looks at the CAT scan, the docs felt it was best to perform an endoscopy to ensure the feeder tube is correctly placed.

Jackie just got out of the OR  and the doc was able to adjust the position of the feeding tube.  We were thrilled with this result.  There was a possibility that they may have had to do another surgery based on the results, but that was not necessary.  He does have an infection around the peg site, but a couple of days and antibiotics should cure that.  Jackie is now in recovery and we expect him to be back in his room in an hour.

He continues to have a temp, but the nurses have been able to use different techniques to keep it at bay without him shivering.

We spoke with the Neuro team and the doc had a positive exam.  She confirmed Jackie’s recovery will be slow.  We also confirmed that after Jackie recovers from today’s procedure we will start to bump up his meds to better attack the blood clot.

We are hoping for a quiet weekend to allow Jackie to rest. I’ll provide another short update tonight.

It has been what I’m sure you already know was a rough night. Your stomach has been moody and acting a lot more like mine than yours these past couple days – with bouts of sickness and discomfort. You looked so tired this morning when we walked into your room to join Dad. One of the most difficult feelings to have is that of pure helplessness and frustration, looking around the room knowing that everyone in there just wants you to get better. To open your eyes, to talk to us again, to hold our hand and squeeze it tight so we know everything is going to be okay.

None of us know, not even you, what the future holds but I  am positive that you will make it out of this as stubborn or more stubborn than you ever were before. You have refused to stop fighting, you’re breathing on your own (huge win that we celebrate each day!) and you even have a very nice start to what I will be lovingly calling your ‘caveman’ bearded look — hello no shave november!

It was the first time yesterday that I saw your heart rate go up when I talked to you. I made sure to let you know I was there and that I loved you plus even shared highlights from the Caps/Flyers game this week. It was a special moment to see you respond to me and it made me squeeze your hand just a little tighter knowing you could feel me there. Please, please sleep well and stay strong baby brother. You are such an amazing person who deserves to have every ounce of normalcy again that the rest of us usually take for granted on a daily basis. There will be a day, down the road, where we will laugh, you will find love, you will get your first job and first house and start a life on your own. I can’t wait for those moments and to share them with you. We are a strong family (seriously, it’s in our genes – look at Nana and Grandma) and we will absolutely get through this together and cross that finish line.

Hang in there today and tomorrow and the next day. One day at a time, one moment at a time, one step at a time to finish this marathon of yours. We’ll get there, don’t you worry about a thing!

Love you lots and lots,

– Sis

“Life is the ultimate marathon for it’s the moments that make up the journey”

We have experienced many different moments today.

Jackie’s temp did not want to stay down.  He has been on the cooling blanket all day and is now getting two meds to keep it where it needs to be. This seems to be working.

After looking at the red areas around his peg/feeding tube the team decided to do a procedure to ensure it was placed correctly in his stomach.  The result of the test confirmed it is in the right place.  We thought we were good to go until a CAT scan was also ordered to take another look.  A couple hours prior to the test, Jackie got sick. We were concerned his body would not be able to handle the contrast dye for the test but it did.  We should get the results back tomorrow morning.

His major pain med was stopped in hopes that we would soon see some neuro improvements like opening his eyes.  We are still waiting – maybe tomorrow.

The docs are still keeping a close eye on Jackie’s blood clot. He continues to do well off the vent and is still having productive coughs with the trach.

Physical therapy came and moved Jackie to a chair.  Near the end of the two hours, his fever spiked so he went back in bed.  The nurse said it is a lot of work for Jackie’s body to sit in the chair – she equated it to running a marathon.  He is staying strong.

Other moments we experienced today included many acts of generosity, friendship and support.  We also watched a newscast from back home showing a level of community support that is just unbelievable.

We are so blessed to have your support and prayers. Thank you from the bottom of our hearts.

Jim’s night with Jackie went fairly well in the new room.  An ICU nurse who typically picks up extra hours in this specialty hospital was attending to Jackie.  This was the best thing that could happen.  She helped us and Jackie positively transition to this new environment.

Jackie still has a temp, but it is low grade enough at this point that they turned off the cooling blanket in hopes that his shivering will stop.  His peg/feeding tube looks a little red so we are watching it.

We just met with the doc who will be following him and feel we are aligned with the care she is recommending.  We are going to stop the main pain med and just use Tylenol.  Hopefully this will help Jackie get out of the fog and open his eyes.

Jackie had another successful night off the vent and is being helped by very little oxygen which travels over his trach opening.

The marathon continues.  Thanks for all the prayers and support.  Will post again tonight.

We all know the phrase – the only thing that is constant is change.  That is holding true for Jackie’s care as well.  We were very accustomed to the AICU (Adult Intensive Care Unit) and the care that Jackie was receiving there.  But since he is now off the vent, it was time to move.  

The best place for Jackie was to move him to a long term acute care facility which just happens to reside within Geisenger.  It is a separate company, but they work closely with the medical staff at the hospital. They will work with us to get Jackie ready for the rehab phase of his treatment.

I must say the transition was not as smooth as we had hoped.  But by the end of the day we resolved most of our questions and Jim is bunking with Jackie on a cot beside his bed.

Jackie still has a temp so is on the cooling blanket once again.  He went through the entire day without being on the vent and plans are to do the same tonight! He is still coughing a lot on his trach.

He still hasn’t opened his eyes.  We are hoping that happens sometime this week. He is also withstanding his nutrition and has reached his hourly goals.

Every day holds new challenges and things to learn – today’s change was like the high jump vs the hurdle.  Ultimately all part of the course to recovery.

Thanks for your positive thoughts and prayers.

I sit here in Jackie’s room and look outside at cars driving by, realizing life and normal routines are still reality for many people.  With just one phone call our routine has drastically changed.  Whether you spill your coffee on the way to work or your computer is running slow, or your hair didn’t go the way you wanted, realize that these are very small things.  Appreciate what you have and celebrate your blessings every day.

Jackie finally had a fairly peaceful night.  He still had a temp so shivered on and off.  His heart rate jumps when he coughs, but then he settles down and is ok.  He was able to go all night without being on the vent.  Huge win!

He is still handling his nutrition through his feeding tube well, so the plan is to gradually increase the amount until he is up to the goal intake level.

It looks like he will be moving to a new room later this afternoon.  He is moving to the LTAC section of the hospital.  This is a long term acute care area that will help bridge Jackie to the point of time when he is ready for rehab.

I will provide more details on the move and his new home in the hospital tonight.  Please continue to send positive thoughts and prayers his way as we enter a new phase of his recovery.