Repeat performance

Another good day- PTL!  Even though Jackie did not sleep as solidly as he did last night, his slumber fueled him enough for another good day!

The morning routines occurred as usual including our visit from the Neurosurgery team.  Jackie’s progress continues in a positive direction as the test results show that the antibiotics are working to reduce the amount of infection in his body.  Patience is still needed until we can proceed with the next step in his care.

His PT session today consisted of sitting on the side of a hard surfaced table and working on his neck muscles and torso strength.  Jackie was then moved to the wheelchair.

His ST session was next and was done while he was in the wheelchair.  Jackie not only tasted, but ate about 1/3 of a cup of chocolate pudding.  He counted on his fingers from 1-5.  He responded quickly to other questions and even remembered something that happened in his session yesterday.  He answered the question before Ellen even finished asking it.  He sat in the wheelchair for a while after speech.  I had brought my ukulele back from the hotel and played and sang some songs for the boys.  My hope was to get Jackie to speak or sing.  That virtue of patience is still needed in this area as well.  He tolerated being out of bed for much longer than yesterday.  A sign that he is gaining some strength back.

He was beat by the time he got back in bed.  After his nap he was back to his old antics of trying to itch his head and reach for his trach.  Even though this keeps us constantly busy, we are so grateful for the purposeful movements!

The nurses are very good at changing his position in bed and keeping an eye on his skin.  As I said before, Jackie has lost some weight when there wasn’t much to lose to begin with.

After completing some mouth care, Jackie ate a few ice chips.  He is starting to feed himself.  I truly believe he will actually be a little stronger when he goes back to Magee than he was when we initially arrived.

My prayers for Jackie are full of gratitude, but also include strength and healing as we get through the next week or two – day by day.

Thanks to everyone who has and continues to touch our lives with countless acts of kindness.

I’ll keep this one short but I couldn’t NOT write to you this morning.

Yesterday was an incredible, hopeful, amazing day to say the least. You are doing so well and despite the odds your body and mind are refusing to give up the fight of getting better and recovering. After hearing all that you had done yesterday from mom it brought tears to my eyes and a huge smile to my face. Such a great gift you are to everyone around you and an inspiration. Even the smallest of daily routine tasks we all forget about during our day-to-day lives, brushing our own teeth, eating pudding using our own hands and strength, you remind us that those tasks are miracles.

It made me laugh that you are using gloves when doing anything related to cleaning your teeth or mouth and after we talked last night I love how happy that made mom and her sometimes germ-a-phobe self 🙂 You make us all so proud Jackie and as for me, your big sister, I couldn’t be more thankful and honored to call you my brother. Even though you somehow managed to sneak in a couple ‘shush’ motions with your hand (thanks dad) to Florent and I -probably just me- for talking too much last night, I won’t hold that against you. We got a wave goodbye and a couple I love you signs with the ‘a lot’ motion added in, bringing tears to my eyes and that huge smile back again.

You are truly incredible, strong, inspirational and one of the most amazing people I have ever been lucky enough to know. It just so happens we’re related, which makes it even better! Love you to the moon and back then back again. Can’t wait to see you in a week for a special Mother’s Day Weekend!

Stay strong and keep fighting little brother. You have come such a long way and it’s just the beginning. I can’t wait to see what the future holds for you, all I know right now is that it will be one hell of a ride.

Love, Sis

A good one!

Let’s chalk up today as a good one – PTL!  Jackie had nice long cat naps all night.  I think his time in the wheelchair on Monday tired him out.

As with the start of any new week in the hospital, it was a busy day.  Jackie was up early and started his day with a bath, morning meds and trach care.  Next up was the visit from the Neurosurgery team.  Once again they were happy with Jackie’s progress.  We will continue to stay the course and let the antibiotics completely wipe out Jackie’s infections.

The skin care team stopped in and took a look at Jackie’s body.  They recommend skin care tips to ensure bed ridden patients avoid skin break down.

Julie from OT stopped by and we talked through the plan for Jackie.  First, we sat him almost in a sitting position in bed and Jim shaved his face and neck.  He was sporting Elvis-like sideburns and a small beard.  It was starting to get itchy so it had to go.  One less thing to itch is best right now.  As soon as Jim was done, Ellen from ST came by.  She brought a special treat for Jackie.  He enjoyed a couple small spoonfuls of chocolate pudding.  He first licked some off his lips and then fed himself a couple small spoonfuls.  He seemed to enjoy the entire experience and I’m sure started feeling like he was actually getting better.

Julie from OT used her lunch break to go to the 5 Below store with me.  Jackie has been keeping his hands busy with assorted stress balls, but was in the need of something different.  We were able to find a bunch of things that should keep his mind and hands busy for a while. Of course I had to purchase a small Flyers tote to keep everything organized and clean.

Jackie had one more PT/OT session.  He sat upright with assistance on the side of the gravity table and exercised his torso and his neck.  He also did band exercises with his arms.  His left side is noticeably weaker than his right.  He then moved back to bed and played Connect 4.  He not only remembered how to play but also used some strategy to win.  By the end of the session Jackie was consistently using the OK hand gesture with Julie.

The rest of the day has been quiet.  He still wants to itch his head and pull at his trach, but that behavior has now become expected for each day. Grandma and Grandpa were here and noticed big improvements.  They also watched Jackie brush his teeth, tongue and apply chap stick.  All things we have been working on.  He likes to wear the plastic nursing gloves when he does his mouth care.

I must admit, yesterday was a rough one for me.  I’m not sure if the lack of sleep caught up with me or if the reality of everything finally kicked in.  Maybe it was both.  I have been trying to stay positive and focus on the future, but yesterday I got stuck in the quick sand of the present.  Having a day like today has put my focus back where it needs to be.

Your positive thoughts, prayers and support continue to fuel our hearts.  Thank you for everything.

Jackie’s night was a mixed bag of rest and restlessness.  Our morning was good with signs of positive neuro functions.  We met with our neurosurgery docs and they were happy with Jackie’s progress.  There are still two surgery options that may have to occur, each day will determine which path we may travel down.

The Infectious Disease doc stopped by and was also happy with Jackie’s progress.  The reality of Jackie’s treatment is now just waiting for the antibiotics to finish the prescribed dosing time.  Any surgeries have to be scheduled after the ID docs give us the go ahead.  We are looking at another week or two.

The PT team came to work with Jackie today.  They hoisted him out of bed with the slick lift system and put him in a wheel chair.  We took a very quick stroll to the same glassed in walk bridge where we had gone before.  It was the first time Jackie was out of bed for about a week.  We only kept him out of bed for a total of about an hour.  It was a lot for him, but still good.  I, of course, wish the Lumbar drain was not in but we just have to be careful as PT is so important to Jackie’s recovery.

I always joked that if I could put my kids in bubble wrap when they were growing up I would.  This whole hospital experience takes that wish to an entirely different level.

Jackie is now officially free of all staples and stitches in his heed.  He is still not supposed to touch his head.  Of course, that is what he tries to do just about every minute.   I’m hoping the urge to itch will subside soon.

At one point this afternoon, I think Jackie was getting overstimulated.  We turned the lights down low and talked softly.  That seems to help.  We always have to be cognizant about too much activity or noise in the room.

We are hoping for a peaceful night of rest.

Healing Hug

Jackie’s night last night was much more peaceful.  He took longer naps and his wake time was not as restless.  In the very early hours of the morning Jackie reached out for me.  I came in close and gave him a hug.  This was my second one but this time his right arm wrapped around me and he rubbed my back.  It was the most wonderful feeling, I wanted to cry but didn’t.  I covered up one tear so Jackie could not see it.  I think it was a healing hug for both of us.

Our Sunday was quiet.  It was actually just the three of us all day and was a low key, low stimulating day for Jackie which was perfect! He stayed awake most of the day so hopefully he will be able to get rest tonight.

Jackie’s tests are still showing his body is working to fight the infection and things are improving each day.  The docs removed every other stitch from his incision.  Once the remaining stitches are out it should give him some relief from the itching.  We are constantly redirecting his hands away from his head and his trach.  We tried other methods to restrain him but they did not work and we feel it is more beneficial to have our personal connection to help with his behavior  modification.  We are just grateful his hands are moving.  The itching and the trach will eventually go away.

Jim and I feel we are now almost back to the neuro function we have seen before.  Every now and then we see glimpses of his personality.  We know the road ahead is long, but we also feel we have a strong foundation to build upon.

Jim worked on some PT with Jackie and we also put his speaking valve on, brushed his teeth and tried to clean his tongue – still some work to do there. He also ate a couple ice chips.  Our goal is to get him as ready as we can for Magee.

We have started Skyping Lindsay and Florent every night.  Tonight Lindsay was just on and Jackie periodically closed his eyes.  I truly believe Lindsay’s voice is comforting to him.  There are many times we get frustrated with technology, but times like this make it priceless.

As always, we thank you for your prayers, love and support.

Recipe for restlessness

Friday night was restless as was the majority of the day on Saturday.  When I sit back and look at all that Jackie has been through, it is understandable why his body and soul for that matter are restless.

If we shelf the brain injury for a second and just look at the fact that Jackie is a very active young adult who has been in bed for 63 days.  He has been on many different meds including several types of antibiotics and has not had consistent nutrition.  His system has not been regular and he hasn’t been able to speak or efficiently communicate.  He has had several operations and countless stitches  which create the biggest itch that can’t be scratched.  He is black and blue from many needle sticks and shots.  Now lay the brain injury on top of all of that.  It is no wonder he is restless.

The challenge is identifying the type of restlessness and taking the correct course of action.  Saturday’s restlessness seemed to be driven by pain.  Figuring out the source is difficult and frustrating for both Jackie and Jim and I.  We are starting to pick up on some of his nonverbal movements, but it is hard to know for sure what he is feeling.  Since we had to stop his nutrition for a couple days, we are back to the familiar routine of starting his tube feeds again.  This process inevitably adds complexity to system regularity which in turn can cause pain and discomfort.  I know how my stomach feels sometimes if I am taking just one antibiotic.  Jackie is currently on two that are way more potent than any I have ever taken.

We continue to be told that TBI recovery is a very long process and I think at the beginning we heard the words but didn’t really internalize and process them.  Things are now starting to become more clear.  Our TBI journey is just starting.  Each mile at the beginning is going to seem like it is several miles long and mostly up hill.   Staying strong and holding on to faith and to any signs of positivity are key to getting to the next day.

The fact that we can totally focus our efforts on Jackie is incredible and something we are not taking for granted.  Our lives drastically changed on February 23, but everything else kept chugging along in its normal cadence.  TBI does not stop the grass from growing or the bills from being paid, or the dog from being loved and fed or the laundry from being done or the work at our jobs from being completed or the fact that showers and sleep are a necessity from time to time.

We have been supremely blessed by support in all of these areas and are so very grateful and so appreciative of everything all of you are doing for us.  Even if reading this blog makes you appreciate things in your life more, that helps bring positiveness to it all.

Thank you for running along side of us and for helping us keep our life together in between the mile markers.  Jackie’s step over the finish line is going to be sweet.  We will get there one day at a time.

Jackie’s night was a little restless.  We believe he was having pain in his back from the Lumbar drain.  His body is starting to fight the second infection.  Through testing, the docs have identified the actual strain and have started Jackie on a new antibiotic that will specifically target and get rid of the infection.

Jackie’s neuro skills seemed to be better today. He is not showing much emotion on his face, but he is starting to get most of the skills back that he had before.

The goal now is to continue to fight both of his infections with different antibiotics. It will take a while to complete these courses of treatment.  When it is safe, Jackie may be getting a shunt.  This is done in the OR.  I feel like I am sounding like a broken record, but we just need to take things one day at a time.

Jackie had PT in bed today and did a lot of work on his neck strength.  Jim will work to replicate these exercises over the weekend.  ST also was here and Jackie ate a couple ice chips and made some very quiet sounds.  During this session he snapped his fingers for the first time. Both of these teams will be back next week to work with Jackie.

We are grateful that the docs were able to identify and treat Jackie’s infections right away.  I truly believe that is keeping us out of the OR.

I am going to keep it short tonight as I am in desperate need of a cat nap. Thanks for your positive thoughts and prayers, they are working.

No surgery today

Three words that bought Jackie some time to heal another day.  As we continue to assess his condition day by day, different surgeries are possible.  At this point the course of action depends on lab results, Jackie’s neuro function and the docs expertise.

We spoke with the Infectious Disease docs and are getting closer to narrowing down the actual strain of this second infection.  By tomorrow we should know if Jackie’s medication needs to be changed.  So far all lab results are looking promising and Jackie’s neuro function did improve today.  PTL.  The communication gap continues to be a challenge especially in situations like this.  We believe he is experiencing some type of discomfort, but knowing the source is almost impossible without Jackie being able to tell us.

Both PT, OT and ST stopped by.  OT did some work with him bedside since he was just too tired at this point to even sit in the chair.  Julie showed us some exercises we can do with him.  Jim did some of these exercises tonight and his left side already seems to be moving more.  Ellen from ST gave Jackie about 3 ice chips, but again his fatigue stopped her from completing a full session.  Both teams will be back again tomorrow.

We also had another special visitor.  Visa, the therapy dog stopped by again.  Since Jackie was not in the chair, we wheeled his bed to the door of his room and Visa’s owner held her up for Jackie to see her.  Even though his reaction was not as evident since he is not feeling well, it was something wonderful for him to see.  I think the therapy was just as helpful for Jim and I as we so miss our Golden Retriever back home.  A dear friend and her family are taking care of Jovie for us. We are told that more therapy dogs will be stopping by when they are in the hospital!

Jackie received new boots today that will help keep his feet in the correct position while laying in bed this long.  He also had a chest X-ray and an ultra sound done on his legs.

We continue to get excellent care from the nursing staff and our team of docs.  Although we would rather not have to be back in the NICU, it is nice to see some of our old friends and make some new ones.

Your continued positive thoughts and prayers will help Jackie gain the strength he needs to beat these infections.  Thank you for all the love and support.

Two Months

Everything they have been telling us about the complexity of recovery from a TBI is turning into reality.  Time and patience are all part of the process of healing.  If we go strictly from a date perspective, today is exactly two months from the day that changed all our lives, especially Jackie’s.  We are in the middle of the 9th week of being in the hospital.  Since Jackie is now fighting two infections, it looks like our hospital stay will be extended longer than we had anticipated.  Disappointment does not quite cover the emotions we are feeling right now.

We are still taking things day by day.  We spoke with the docs that deal with infections and are hoping that we will know even more information tomorrow about the specifics of this new infection that made Jackie so sick.  For now, the antibiotic Jackie is getting should be working to help keep things under control.  Jackie has been sleepy due to all of the medications.  During his waking periods his neuro functions have been good, not like two days ago, but not bad.  His vital signs are now stable and we think he is feeling a little better.

Based on how each day goes, determines the next steps.  Jackie had both a CAT scan and an MRI today.  We will be reviewing these with the Neurosurgery team first thing tomorrow morning.  Jackie could possibly be having surgery tomorrow.  We will know for sure in the morning.

The infections, without a doubt, complicate the course of treatment.  We are trying to keep Jackie as positive as we can as he faces an uphill climb these next couple days.

We spoke with both the PT/OT and the ST teams and they will continue to work with us. We are thrilled, as this interaction will keep Jackie motivated and will also help us prepare for his Magee transition.  We will get to Magee!!

As I try to deal with all of the emotions that flow through my mind, my heart goes out to the parents who have lost their children in the ferry boat accident in South Korea.  We were thrown into a devastating situation as well, but at least we still have the chance to touch and talk to Jackie.  That is now gone for many of those families.  If you have a chance to pray for Jackie please add some prayers for the families of the Ferry victims and also for the families of children facing long term illnesses.

I know this may sound corny, but every day is truly a gift.  Wrap every moment with love and kindness and appreciate all that you have.  In an instant it could all change.

A backward slide

The first half of Jackie’s night was peaceful; however, this changed around 2am.  Jackie was restless.  We thought he might be having pain from the combination of his system running slow and the Lumbar drain.  We gave him Tylenol.  It helped a little but he was still not feeling well.  He was gradually getting worse.  We gave him the med for nausea but he continued to get sick all morning.  He was immediately taken down for a CAT scan which showed increased fluid in his brain.  He also had developed a new infection on top of the one he already has.

Based on his condition he was moved back into the Neurological ICU.  This is where he spent the first ten days when he was admitted to Jefferson.

The next couple of days could be challenging and may include trips to the OR.  The docs are taking things one night and one day at a time.  That is what we need to do as well in order to get through.  His doc said that it seems as though Jackie has just completed a marathon and is starting one all over again.

There is no point in asking why this happened when we were so close to getting back to Magee.  We just need to take a deep breath and tackle each hour, each night and each day as it comes.  This is without a doubt a slide backward, but one that Jackie can beat in order to start moving forward again.

Thank you for your continued positive thoughts and prayers.