Day by day – Mile by mile…

The first half of Jackie’s night was rough.  We believe he had a painful headache due to the lumbar drain and the amount of spinal fluid initially drained.  The second half of the night got a little better as we gave him IV meds for pain.

Jackie’s neurosurgeon stopped by this morning and reviewed the day by day plan with us.  Today the nursing staff will drain a small amount of spinal fluid every hour.  Jackie will be accessed each hour to ensure he is tolerating this drainage amount.  His spinal fluid will also be tested daily.  From there we will go day by day gauging next steps on Jackie’s condition and neuro function.   He will remain in the ICU for now.

Lindsay and Florent just left.  It was so great to see them and give my Lindsay a huge hug.  They will be visiting again next weekend.  Saying goodbye was not as hard knowing we will see them again soon.  Jackie was so happy to see them.  He laughed at a story that Florent told and loved caressing Lindsay’s hand all day.  They both have a lot going on in their lives and the dedication, caring and love they have shown toward Jackie has been incredible.

The marathon continues.  The course is challenging and long.  Since Jackie is still not speaking, I can only imagine all the thoughts and feelings that are going through his brain.  Jim and I are starting to see behaviors that are tied to feelings.  Very early this morning Jackie stared into my eyes and I could tell he was hurting just by the intensity in his gaze.  I know it may take a while and is many miles down the road, but how I am looking forward to a day filled with more smiles and joy than pain and frustration.

Yet another hurdle…

They told us and we are finding it to be true, TBI is one of the hardest injuries to treat.  It takes lots of time, patience and adaptability as each day can bring unforeseen challenges.

Jackie had a good night last night.  The most he slept at one time was an hour and 45 minutes, but he did take about two additional one hour naps.  His neuro function was good this morning.

Our neurosurgeon came to visit early this morning and based on his exam ordered a CAT scan.  The result of the scan indicated additional fluid in the brain.  A lumbar drain was put in and some spinal fluid drained.  Jackie is having some pain from the drain insertion which we are trying to manage as best as we can.  The team is keeping a close eye on Jackie and will most likely drain more fluid in the next day or so and then check things with a follow up CAT scan.  The placement of a shunt may be needed.  From our conversations with our Geisinger docs we knew this could be a possibility for future treatment.  We have a feeling we will be in the hospital a while to treat the infection and keep an eye on the fluid retention.  As always, we take a deep breath and go day by day, praying for a break for Jackie or at least a string of a couple good days.

Jackie was unable to participate in a PT session but was able to meet with ST for a little bit.  We are now heading into the weekend and will not see the specialty teams until Monday.

Jackie is also starting a new antibiotic for his infection.  It can be given less times a day than the other med and will not require blood draws.  A big win.

Jackie is looking forward to seeing Lindsay tomorrow and Florent as well.  It will be a bright spot that he could use right about now.

We still ask that we do not have visitors until we get through the next couple days or so.  We so appreciate all of your prayers for extra strength and healing for Jackie.

It is 1:15am and I am coming off a power nap.  Jackie has just fallen asleep.  If patterns hold true Jackie won’t be sleeping for long.  Since I did not have the time to update you on Thursday I thought I would try to get caught up now.

Jackie slept much better Wednesday night and I am hoping it is the start of getting into the normal routine of days and nights.  His accumulated sleep amount overnight is still not where it should be.

We are gradually working up to his  goal nutrition level.  This is beginning to sound like a broken record.  It is such a huge part of Jackie’s recovery and as you  know has been quite a challenge so far.  We had a test done that confirmed his body was moving the nutrition from his stomach to his intestines, so we keep plugging away trying to eliminate any other triggers that inhibit nutritional success.  Jackie continues to lose weight so the nursing staff is using gel bandages to cover boney spots.  Getting bed sores is to be voided at all costs.

With all of that said, Jackie still finds inner strength that surprises us.  During PT on Thursday they laid him flat onto a gravity table.  The table moved at the bottom when a piece of it was taken out.  The PT team had him use his legs to do squats. Jackie was then moved to a more upright position.  After a short time in this position, he was lowered and moved to a high backed therapy wheel chair.  Seat belts are used around the torso and abdomen to try to keep the patient in an upright position.  Never fails, Jackie’s leg movements always end up sending him into a slouching position.  With the help of a couple boosts back up in the chair, he stayed upright for 2.5 hours.  This completely tired him out and he took a well deserved nap once he was back in bed.

ST stopped by once Jackie had woken up.  I was glad they were able to visit as they are short staffed and the demand for their time is high. Even though he was awake, Jackie was still tired from his PT session.  Jackie ate two ice chips, made it through a couple brief neuro checks and then took another short nap.  We still cannot get him to speak using his trach.

The Infectious Disease team was able to pinpoint the specific infection that has caused the set back.  They stopped two of the three antibiotics.  PTL. The reaming antibiotic should knock out the infection, but Jackie will most likely be needing to take it for 6 more weeks.  This is given through an IV site.

The two drains that were inserted into Jackie’s head during surgery were removed on Thursday as well as the bandaging over the incision.  Like his other incisions, exposure to the air will help it heal quickly. The overall swelling on the right side of his head appears to be going down, although his head on that side still looks a little full.  The docs are keeping a close eye on his progress.

Your positive thoughts and prayers are helping Jackie get through this set back.  Thank you for lifting all of us up with your support and love.

I miss your laughter, your jokes, your ‘my sister is clearly crazy’ look, your jokes about my lack of car knowledge, jam sessions with the windows down in your car over weekends of Spring Break and summertime.

I miss our eye-rolling in unison when the parents are being ridiculous as always or embarrassing in public (which I believe is technically their job).

I miss you, your newfound happiness with life and yourself. The way you would know exactly what tech gadget or app was the one to have at the moment and the smart, intelligent young man you have become.

Today is National Sibling Day and Throwback Thursday or as you know it by #tbt which means that I tag you in pictures as always and reminisce on older memories from weeks or months ago. This time is a little different though. You can’t see them, you can’t read them and you don’t call me or text me back. Sure – this will change and you will get better soon to do those things again – but it does not make it easier for your Big Sister to handle. I know right now if you could be here next to me we would be laughing about the weather and the crazy outfits people have on walking outside, now that it’s finally spring weather. Or maybe we’d start discussing cars and which dream car you have stumbled on owning after college graduation. It will all slowly fade away back into what your life and our life was before this happened but for now I just want you to know how thankful I am to have a brother like you, and a family like ours.

You are an incredible human being and one who would do anything for anyone you met without a second thought. I hope to be like you when I grow up and to be able to fight as hard as you are to get better, stay strong, keep pushing to get to the end of the race. It does not matter how long it takes you to get there bud, all that matters is we cross it and do it together. You and me singing, dancing (not very well) and laughing together like old times. Can’t wait for that!

As for now, Florent and I are counting the days until we get to see you again. We’re coming this weekend and are so excited to be with you and kick your butt into gear during therapy sessions as always – you know you love it!  I will see you soon baby brother. Very, very soon.

Love you lots and lots and more.

– Sis

Relative distance

Thomas Jefferson hospital  is nestled in the heart of center city Philadelphia, Magee Rehab is about 10 blocks away.  We initially reserved a hotel room that is in close proximity to Magee.  We have kept this room and have moved in for at least the next 30 days and most likely more.  We have yet to sleep in the large comfy bed, but have set up camp and get showers there.

Tonight when I was traveling back to the hotel for an overdue shower, I looked at so many people who were in the middle of their post work routines, hustling to catch a cab, chatting with co-workers, waiting for a bus, riding their bikes or catching a happy hour special.  I almost felt like I was in an out of body experience.  Even though I was right there in the midst of it all, I felt as if I was watching everyone’s life unfold in front of me while mine was stuck in slow motion and sometimes reverse.  I wanted to share my story in the elevator just so people would appreciate what they have or at least tell them to stop taking things for granted.  I saw a handsome young man that reminded me of Jackie and with all of my heart, I hope that Jackie will have that life someday.  One moment in time, one life changing event, one chance to do all we can to help Jackie fit back into the hustle and bustle of normal everyday life. It may take time, but we can go the distance and do this.

Jackie’s night last night post surgery was very restless.  He slept very little and I must say we struggled at times as his activity level continued to increase.  We were happy; however, for the movement and continued to redirect his hands so that he did not injure himself or his new incision.  We are hoping tonight will be a little more restful.

Early this morning we spoke with the Neurosurgery team.  During Jackie’s surgery they cleaned out the infection, but couldn’t save the right bone flap.  It will need to be replaced at a later date with an artificial one.  Fortunately the left side is still untouched by the infection.  As you can imagine we were disheartened by the news.  First and foremost though we were grateful Jackie did well and we have a good chance at kicking the infection.  I would lie if I said I wasn’t struggling with how we could have made this slide back.

With true apprehension for how the day would pan out, we had some highlights that have kept me focusing on getting to rehab as soon as we can.  Jackie had a very good session with the ST team.  We do miss Lenora, but the therapist here was able to pick up where we left off.  Jackie ate some ice chips today and also showed good neuro functions.  The PT and OT team got Jackie out of bed and moved him to a chair.  He was still actively moving his arms and legs, so it was hard to focus on any particular exercise.  I’m sure Tara and Eric would have had a clever trick to get Jackie into shape.  Tomorrow PT plans to use a table similar to the gravity table we used before.

We also spoke with the ENT, the respiratory therapist, the nutritionist, the intensive care docs, the Neuro teams and  even the rehab docs.  These docs will be following Jackie and advising us the best time for the transition back to Magee.

I just helped Jackie’s nurse give him a bath.  It seemed to settle him down.  He is peacefully sleeping for now.

As we get through these post op days we are still asking that we do not have any visitors.  I’m sure this time period won’t be long.

Thank you for sending healing prayers Jackie’s way.

Jackie returned from surgery and is still sleepy. He is responding to general reflex neuro tests and has opened his eyes twice for us.

We have some details from the surgery, but are waiting to confirm everything with the surgeon.  Jackie does have two post surgical drains which are common and both appear to be draining as expected.

I will have more details tomorrow.  Just wanted everyone to know that he is out of surgery and staying strong.

Thanks for your positive thoughts and prayers.

High hurdles

Yesterday started out with the best neuro function we have seen since we arrived in Philly.  Jim even got Jackie to laugh three times.  It felt good.  He waved goodbye to docs, did thumbs up and even did a fist bump and explosion with a nurse. PTL

With all of these hopeful signs came new higher hurdles.  I mentioned before that Jackie needed to get a PIC line in.  The procedure appeared to go ok, but when we returned to his room his heart rate rose high and quickly.  We were sent out of his room as numerous members of the medical staff worked to determine and resolve his condition. They were able to stabilize him but he experienced a seizure.  He had two seizures previous to this when we were in the ER.  Right now, there are many things that may have caused the seizures including his infection.

The infection which was self-contained has now started to ooze out of his surgical incision.  Jackie just went down to the OR.  The goal is to wash out the infection and go from there doing whatever is necessary to clean it all out.

Thank you for your prayers for Jackie as he faces yet another day of challenges.

Old and new patterns

Jackie had a very restless night last night.  He probably slept no more than an hour.  We can tell he just is not feeling well.

We started the process of beginning his nutrition once again.  We had very slowly worked him up to about 2/3 of his new lower goal, and unfortunately he got sick early this morning.  The solution to this old pattern of behavior is now complicated since many new medicines have been introduced to his body.  We are told that even nutritional decisions are driven by weighing the risk factors.  Timing of when to make the decision to begin IV nutrition vs peg or feeding tube nutrition needs to be right.

Late last night we gave Jackie meds to help with his system.  Still no success.  An x-ray was taken of his abdomen this afternoon to ensure everything looked ok.  Finally, he had some relief. We are hoping this will make him feel a little bit better.

As I mentioned in earlier posts, getting new IVs started and drawing blood has become a daily struggle.  We are looking at putting in a PIC line tomorrow.  This one IV inserted underneath his skin can service up to three IV lines and can stay in for a while.  We almost do not have a choice but to do this.

We have seen very small glimpses of improved neuro function.  In an effort to test if Jackie’s eyes can focus and move correctly, the doc held up a $10.00 bill.  Jackie tracked the bill with his eyes all the way back to the docs wallet.  We thought this was an appropriate object to use for Jackie.  In fact, when we were with the nurse talking about it, we were able to see a slight smile/laugh from Jackie.  PTL

The swelling at the infection site has not changed. The docs are keeping  a watchful eye on this to make sure the course of treatment is correct.  The infection must be painful for Jackie as we have seen him stop himself before opening his mouth wide enough to finish a yawn.

We are continuing our request to hold off on visits for now.  We even asked our families to hold tight today.  It is so hard for us to do this as we appreciate the support you have given us more than you will know.  We just think Jackie needs some downtime.  Jim and I are taking turns taking cat naps in his room.  We are both sleeping in is room at this point as we would like to be together until Jackie’s condition becomes more stable.  We also both want to be here when the docs stop in.

As I mentioned yesterday, TBI adds an extra layer of complexity to patient treatment as every case is unique.  We are on a dedicated ICU floor specifically for neurology patients.  Several teams are working together to implement the best course of treatment for Jackie.  Our best hope is that the docs can steer us down the correct path as old and new patterns create new crossroads to care.

Turning over every stone for an answer

The teams of docs at Thomas Jefferson continue to search for the cause of Jackie’s set back.  They are looking at everything, trying to determine the catalyst for his infection and fever.

Today Jackie’s fever went from being high to low grade as the three antibiotics are hopefully working to cure the infection that is causing the pain and swelling on the right side of his head and face.  His movements became a little more purposeful today which is good, but he is still showing signs of pain and discomfort.  I so wish he could talk.  His hand responses are not strong or consistent,  so thumbs up and squeezing our hands at this point are not options for communication.

He had to be sedated for some of his tests so we are hoping he will soon wake up and break through the fog he is in.  Even though he is not opening his eyes wide, I know he is looking at me and can hear me.

We were so close to the next leg of the marathon, that virtue of patience keeps staring us right in the face.  The ‘why’ questions could so easily be the focus of every day, but to what end.  Patience and faith are key to getting us through this rough spot.  It is so important to ensure the steps to healing him are the right ones.  The docs realize that and are keeping a close eye on everything to make sure the treatment course is correct.

I think about when I was a kid and loved to skip stones in the water.  Sometimes  I would have just the right throw and the stones would skip effortlessly in a perfect pattern across the water.  Other times the rocks would not skip at all or would only skip once.  We have realized that traumatic brain injuries do not follow perfect or predictable patterns of healing.  There are times when you think you are on course only to be starting the mile over again.

One thing is for certain, Jackie is young and strong and those qualities represent two huge shiny stones in his pocket.  It is just a matter of time until they skip him into the final phase of recovery.

Thanks as always for your prayers of healing.

Testing continues

Jackie was admitted from the ER to the NICU last night. Since then he has gone through an intense battery of tests. The right side of his head and face is swollen. He is on three different types of antibiotics. They are still working to determine the cause of the swelling.

On a positive note the pressure in his brain is stable and an ultrasound showed that his blood clot has resolved itself and is no longer there. PTL

His neuro function is not where we would like it to be, but are hoping it will just take his body time to build itself back up and get healthy again.

Hopefully we may have more answers tomorrow. Thomas Jefferson is an incredible hospital with a top notch Neuro team.

I will most likely only post once a day until we get through this hurdle.

Thanks for all of your positive thoughts prayers and support.