This week started out on the highest high note we could ever hope for. You had received the news that Magee was within reach and were headed to the rehab center the next morning. I got the call from mom telling me she was in her car (Betty, as we call it at home) and following behind you and dad in the ambulance. She sounded so excited, hopeful and positive more than I’ve ever heard through the entire process which made my heart happy if only for a moment. This was the start of something new, fresh, thrilling and we all felt it could only go up from here.

But when you got to Magee Mom and Dad could tell you were not feeling well. I didn’t hear from them until this morning with updates I was not expecting and were hard to hear so far away. They had been right, you were not feeling well and needed some extra time and help to get your strength and energy back. Even though this seems like a huge step backwards I want you to know that no matter how many times this happens or when we have to face yet another hurdle and obstacle in the marathon path, we will absolutely get you to that finish line. There is nothing that could break our love, bond, strength and faith we have in you and your mind. I know you will fight through this, like everything else that has been thrown your way and get to Magee whether it takes weeks or months again. This is a detour on the way to the finish line and my hope is that it’s more entertaining and scenic than the one before.

Don’t give up, stay strong, keep believing and what you dream you can achieve. Love you so, so much to infinity and beyond little brother. You will do this. You will get better. We will always be at your side.

– Sis

To those who are reading the blog and following with more love and support for Jackie than we could have ever hoped for, thank you. Here is a note from our mom:

We could tell Jackie was not feeling well overnight at Magee. By 8 a.m. we were in the ER at Thomas Jefferson hospital. Jackie is now in the neurological intensive care unit. Will have more information to share tomorrow.

Please don’t lose hope and always remain positive. We’ve done this before and we can do it again. Together we can bring him through this and finish strong. Love to all of you. Thanks again for holding my family up when we need it the most.

Road to Rehab

By 10:30 this morning we were on the road to Magee Rehab in Philly.  Jim rode in the ambulance and I followed in our car.  We didn’t anticipate being discharged from the hospital that early this morning, but we were ready for the possibilities that await Jackie.

To say the morning was a whirlwind of activity would be an understatement.  There was much to do and many good byes to be said to the different teams who have cared for Jackie for the last 5.5 weeks.

The ambulance ride took about 2.5 hours to get here.  From Jackie’s cough and facial expressions, Jim could tell he seemed a little queasy about half way through the ride. He was given a shot of something to help calm him down.

When we arrived, we met Jackie’s nurse and then we met with some of the doctors while he was accessed by other members of the staff.  When we come back to his room, Jackie seemed very restless.  He also seemed scared.  Since one of us has been by his bedside since the beginning, it must have been odd for him to not have one of us there.

Jim and I have decided to stay with him in his room for now.  We will  likely start taking shifts or possibly switch on and off nights until he gets accustomed to the new place.  They do have staff that sit with him, but neither Jim or I know them that well and it is hard to drop our guard at this point.

I’m hoping we see him smile again tomorrow, as he still does not seem quite right.  The staff has been great so far and we will just need to take things one day at a time.

Thanks for your prayers.

A new leg of the marathon starts soon.

Jackie’s day started with a CAT scan. The result would determine our next steps.  As in days past we waited anxiously to meet with the Neuro team.  The images indicated a stable condition in Jackie’s brain.  PTL!  We got the green light to go to Magee!  We may be heading to Philly as early as tomorrow or Thursday.  There are tons of communication and coordination that need to be resolved prior to our departure.  All we know is that we need to be ready to go tomorrow just in case.  This is truly a blessing and a day we have been praying would actually come to fruition.

One of the check list items for rehab admission is to have a current PT/OT and ST update.  The Geisinger PT team had Jackie sitting on the side of the bed and held him up in the standing position.  That must have been a bright spot for Jackie.  They also did other exercises to evaluate his strength and physical ability.  Since Jackie passed the swallowing test yesterday, Lenora with ST, gave him ice chips, licks off a lollipop and even a small taste of a special purée of YORK Peppermint Patties and milk.

The road ahead will be full of tough and tiresome days for Jackie. We will have to continue to keep a close eye on his neuro functions.  If any decline is seen, the solution may still be a shunt. He will also face challenging therapy sessions that will ultimately help him break free from a body that has kept him trapped for 37 days and counting.

I may have one more day of single posts but should be able to get back on track with two posts a day soon.  Thanks for your continued positive thoughts, prayers and support.

Mixed Emotions

Today has already been a whirlwind of activity creating a cocktail full of different emotions.

The private room is wonderful!  It is at the end of the wing and has a nice large window that is currently allowing beautiful sunshine to warm Jackie’s body and soul.  Most importantly, the room is quiet.  We currently have the glass door closed to decrease the ever constant noises of nurse call bells, monitor alarms and visiting medical staff.  It is the right environment for a TBI patient.

Very early this morning both of Jackie’s IVs started leaking.  They needed to be replaced.  The nursing staff is to attempt the new IV sites; two attempts failed.  The IV therapy team was called in.  Out of three attempts, only one was successful.  Another IV therapy staff member came to the room and was able to get the last of the two sites in on the first try.  Jackie’s arms look like he is an addict.  There are just not that many places they can find to put in IVs or get blood.  Jackie has no choice except to be tolerable of all the pokes and prods.  I have actually seen him nap through one of his blood draws.

As soon as the IVs were in, we headed down for the CAT scan.  We waited with anticipation to speak with the neuro team, anxiously awaiting the next steps in the plan.  The results showed that the fluid amount was stable, but there was still some bleeding as a result of the surgery.  It was decided that waiting another day and getting a repeat CAT scan is best.  Patience is needed once again.

Even though there is no way to tell,  I questioned if the blood thinning medicine could have added to the bleeding.  We consulted with the medical team.  I needed to be more educated on Jackie’s blood clot and treatment.  Due to the location and other risk factors, we have decided to take  Jackie off therapeutic levels and based on discussions with the Neuro team tomorrow may alter his meds to include a low level drug.  We will reevaluate all of Jackie’s meds when we get to Magee.

Lenora, ST, stopped by with homemade gluten free cookies in her hand.  I’ve eaten several already along with some banana bread made by Florent’s mom.  So good. I do sugar, not caffeine.  The session went extremely well.  Jackie’s mouth and tongue movements are increasing and he even tasted a lollipop that was held to his mouth!  He also ate some larger ice chips.  Based on this success, Lenora scheduled a test that would show via X-ray if Jackie was swallowing correctly.  The result of the test was positive.  She may introduce a small portion of puréed food tomorrow.  All very positive and necessary steps to getting the trach removed.  Jackie also vocalized a couple sounds!

PT will work with Jackie tomorrow. We had him moved to his chair so he would have some total body movement today.  Until we get to Magee we need to find ways to stimulate him.  He is bored with just laying in bed.

We had a surprise visit from some of the staff from the Select Specialty hospital.  They brought a note signed by all of the team along with a personalized Flyers Jersey.   They felt Jackie needed to be dressed appropriately for his trip to Philly.  A very special gift from a truly caring group of medical professionals who we also feel are now our friends.

Some of Jackie’s nurses from ICU and Select Specialty have stopped down to see him.  He gave one of the nurses a beautiful smile today.  He still has game!

It is now time to get some power naps in before the night hits.  Last night Jackie slept on and off for about 2.5 hours.

Even though we did not head to Philly today, Jackie made major strides in speech therapy.  He even tried sleeping on his side for the first time.  This marathon is going to be long, it is also going to be full of many emotions.  We just need to take each mile as it comes and embrace the laughter and the tears along the way.

Continuing the plan…

Sorry for the late post.  Today I decided to write just one update.

Last night Jackie was restless.  He slept a total of 1 hour which was broken up into three 20 minute naps.  The sleep deprivation reminds us of when the kids were infants.  I remember Lindsay didn’t sleep for more than 3 hours at a time for at least 9 months.  Compared to what Jackie is going through, sleep deprivation is easy.

Both of Jackie’s arms and legs are extremely active. He is constantly exploring with his hands – everywhere.  We can now let him touch his head a little more since the bone flaps are back in.

Up until today, we have told Jackie that he is in the hospital and that he fell and hurt his head.  We have noticed that he is starting to put more pieces of the puzzle together.  Just the other day he looked down and read his name on my wrist band.  I could tell he was processing the fact that if his name was on the band he was really sick.  He is also feeling all the staples that are now once again, back in his head.  He also hears conversations about his meds and blood work results.  It appears he is handling all of this new information ok.  We will need to ask help from specialists on the best way for him to mentally heal.

Very early this morning the area where the Lumbar drain was pulled, started to leak again.  The Neuro team was paged and he ended up having to have a staple put in to stop the drainage.  He was a champ through the entire process.  He also had to lay directly on a rolled up towel all night to put pressure on the open area.  I know that had to be part of the reason for his restlessness.  The Neuro team also said that restlessness is par for the course for TBI patients.  The marathon continues.

The Neuro Docs visited this morning and were happy with his exam.  The plan is to get a CAT scan tomorrow morning and go from there.  If the scan looks good we could be putting plans in place to head to Philly.  If the scan shows more fluid build up we may be looking at going back into the OR to have a shunt inserted.  We will just need to wait and see.  That virtue of patience now comes back into play.

Jackie had a low grade fever since surgery.  It is starting to slowly get back to normal.  Due to his blood loss during surgery and also through the post surgery drainage tube, his iron levels are very low.  He is now getting an IV drip of iron and will also need to get a supplement through his feeding tube. His swelling is getting much better.  It has now moved to the bottom third of his face.  He can tolerate the swelling so much better now that he can completely open both eyes.

We are back in the process of starting his blood thinning meds. It takes a while and a lot of blood draws to get him to a therapeutic level. Just one more med his body has to handle. Due to his blood clot, he will need to stay on this med for a while.

Since Jackie was having a better day, his nurse decided to get him out of bed in the chair.  This chair is basically a hospital grade recliner.  It does not have all of the adjustment capabilities as the one he used to sit in prior to this.  Since he no longer has to wear a helmet, it is more comfortable for him to make the move from the bed to the chair and much more comfortable while in the chair.  The PT team had him sitting on the side of the bed and encouraged Jackie to try to hold himself up more.  It will take time, but his strength is slowly coming back.

It is amazing the differences we have seen in Jackie since his surgery on Thursday.  His left arm and leg are just as active as his right side now and we are starting to see more expressions on his face.  PTL. Communication as well as tongue movement and swallowing are all areas that we are still working on.  Lenora should be back tomorrow so Jackie can continue to make progress.

That virtue of patience just paid dividends.  Jackie is now in a private room.  It is so much more quiet – in fact we just wheeled him in and he fell asleep.  Hopefully it will be a restful night.

Thanks for all your support including all of the local efforts in our home town this weekend.  We are blessed in so many ways to have the generous support of family, friends and an entire community.  This support, your positive thoughts and prayers are appreciated beyond words.

Jackie’s bandage around his head is now gone.  His new staples parallel the scars from the first incisions.  Minus the swelling he is starting to look like Jackie again.

The bandage at the Lumbar drain site needed to be changed. Jackie was positioned in a way that would help stop the discharge from the site.  It looks like the drainage is slowing down.

Jackie is still very active at this point.  We are hoping his late nght dose of meds will help him have a peaceful nights sleep.

Post is short tonight as I am trying to catch a quick nap.  I’ll provide more updates tomorrow morning.

A day for healing

Jackie had a better night last night.  His periods of restlessness were less frequent than the night before.  I think consistent dosing of pain meds is helping him manage the discomfort.  His facial swelling will take a couple of days to dissipate.  He has been able to open his right eye about three quarters of the way and he has just been able to open the left eye a tiny bit.  Not a surprise that the left eye only opened when Lindsay walked into his room.  There is a most special bond between those two.  A true blessing.

The PT and OT team stopped by and together we decided it would be best to just do PT from the bed vs getting in a chair.  His legs including hip joints were stretched.   I don’t think his gauze wrapped head would fit in his helmet anyway.  We decided that a day of rest and healing would be best, especially since both of his legs and arms are now very active.  PT plans to work with him more aggressively on Monday.

We are beginning the ever familiar process of starting his nutritional feedings. We are now at half of his goal and only had to step backwards once.  Our plan is to have him at his goal level by the end of the weekend.

We were just sent to the waiting room as the Neuro team is removing the gauze bandaging, the drain from his head and the Lumbar drain from his back.  The recent CAT scan is showing that the fluid in his brain is currently stable.  His neuro functions will be checked daily and a repeat CAT scan will be done on Monday.

PTL!!!!

Will post again tonight.

Thanks to the pain meds, Jackie rested a little more comfortably today.  His left eye is completely swollen shut and he can open his right eye just a tiny bit.

Earlier in the day OT/PT therapists stopped by.  We miss the dynamic duo of Tara and Eric.  They cannot work with us now since Jackie is back in Geisinger.  Jackie had just fallen asleep when they stopped by so they came back after seeing another patient.  They had hopes to work with Jackie in bed and then get him out in a chair, but Jackie was tired and not feeling well.  They did a small session with his legs and arms in bed and plan to come back tomorrow.  I’m not sure Jackie will be up for it.

Lenora, ST, stopped by mid afternoon.  We thought we would give it a try.  Despite how he felt, he pushed on and had a good session with her.  She did oral care, gave him two very small pieces of ice and worked with his hand communications and also asked him to respond to some questions.  He wore his speaking valve, but other than a low growl did not produce any sounds.

We continue to give Jackie meds to help his system move.  The surgery has slowed things down once again. I just hope he does not have discomfort tonight.

Jackie is scheduled for another CAT scan tomorrow morning.  We are still waiting to get a review of this mornings scan.

Thank you for keeping Jackie in your prayers.  I’ll post again tomorrow.

Jackie had a restless night.  In fact he only slept for about 1.5 hours.  Communication is still a struggle so we wrote three body parts on a piece of paper.  We asked Jackie to point to the body part that hurt.  He pointed to the word that read – head.

We spoke with the docs and are starting pain meds around the clock. His face is really starting to swell.  It will most likely get worse the next couple of days.  This is a normal reaction from the surgery.  His eyes are already almost swollen shut.  I cannot tell you how hard this is for a parent.  My heart goes out to all of you who have children that have gone through major medical issues as I now can completely understand the helplessness that you have felt.  I  just want to make it all go away.

Jackie’s initial CAT scan from right after surgery looked good.  PTL. He already had another scan this morning.  We are waiting for those results. They will dictate our next steps.

We are once again getting another roommate.  This will be our third one.  A private room is still not available.

Lots of strength will need to be gathered to get through the next couple days.  We will need to work Jackie through the post op swelling and pain, starting up of his meds, the nutrition through his feeding tube and also at some point restarting his blood thinners.

I am so proud of Jackie’s strength and determination to get through this.  Each day we get a little closer to getting whole again.

Jackie is slowly starting to come out of the anesthesia.  At the beginning it reminded us of when he was little.  He had two minor surgeries before he was 7 and when he woke up he didn’t know what to do with himself for a while. We are seeing the same type of response.  After his first surgery at the end of February he was in the induced coma so we really didn’t experience what we are tonight.

One thing is for sure, we are seeing much more body movement.  For the past week and especially the last couple days we have seen very little movement of his left leg. Since his surgery his left leg has been moving just as much as his right leg.  His hands are still active, plus we are seeing more upper body movement.  He is actually moving his head and neck more and trying to lift up his shoulders.  He takes little cat naps in between being awake.  During the times he is awake his heart rate really elevates.  Since he still cannot speak, it is so hard to figure out how he feels.  I again equate this to when he was a toddler and was sick.  We knew something was wrong, but it was difficult to pinpoint the actual problem.  We decided to give him some pain meds with the start up of other meds.  Right after they were given he spit up a little.  We are not giving him anything else through his feeder tube tonight.

Jackie’s head is all wrapped up in gauze.  Even his ears are covered.  At one point he reached up and felt his head.  We reminded him of his injury and the surgery. His drainage tube is starting to slow down, which is good.  It was filling up quickly at first.

The marathon continues. We are becoming more knowledgable about medical terms and conditions and even the administration of meds with every mile.  We have encountered and have successfully jumped over hurdles.  We know there are many miles ahead, but continually are thankful that Jackie has the chance to just be in the race.

Hopefully following Jackie’s progress will help you realize that some of the hurdles you have been facing are merely bumps in the road.

As always, thanks for your positive thoughts and prayers.  We would still like to hold off on visitors until early next week.  We think Jackie just needs time to get through this phase of recovery.