Last night was a long one.  Jim and I stayed together with Jackie until 3am.  After my post last night, Jackie got sick two more times.  Everything that was going into his feeding tube was stopped since that point in time.  He had another X-ray done and it did show a very slow bowel.  We could tell from Jackie’s heart rate and the movement of his legs that he was in pain.  The overnight doc prescribed some IV meds that helped Jackie calm down and handle the pain better.  About a half hour after the X-ray Jackie had some relief.  We are hoping to talk with the Trauma team this morning to review next steps.

We have already seen the Neuro team this morning.  PTL his staples were removed.  From my rough counts, I’m pretty sure there were over 100 in his head. I held his hand while they double teamed him in order to remove the staples faster.  He tolerated the entire process very well. At this point the team is just going to keep an eye on the extra fluid.  We are waiting to see if his body can get rid of it on his own.  This is great news as we can now move forward with the process to eventually get the trach out.

The PT team is working with Jackie now.  Because he had a tough night they decided to do something different today.  They are moving him from his bed with the help of a board to another table.  They will strap his body in and elevate the table so Jackie will be held into a standing position.  The gravity will do his body good.

Even though last night was trying, the activity of the morning has given us hope  for a better day.  Count your blessings and realize how much just being able to stand is a gift.

Will post again tonight.

I am sitting in Jackie’s room with one of the prayer blankets so beautifully made for us wrapped around me.  It is cold in his room but that is good for Jackie since he sleeps on a plastic air bed that inflates in different ways at different intervals to help prevent bed soars.  We feel so fortunate to have the love and support of all of you.  Your cards, your financial support, your prayers and your overall caring means so much to our family.  We are so deeply grateful.

It’s Monday.  The hospital has become alive with activity.  Eric and Tara (PT and OT) were the first team to visit Jackie. He was not really awake, but that did not last long.  They sat Jackie up on the side of bed and then started the session.  Tara had Jackie hold a piece of ice in his hand.  If he didn’t want to keep it there he had to give it back to Tara.  He did. Jackie always seems to be fascinated with the latex gloves when he holds Tara’s hand.  She asked him if he wanted to wear one. He gave the thumbs up, so for half of the session he too wore a medical glove.  The session continued with stretches, different sitting positions and they even held him in the standing position again.  He is still having problems holding his head up.  I’m sure this will come with time.

After the session he sat in the chair.  We were hoping his system would move but it didn’t.  Once back in bed Lenora (ST) came in for a visit.  She put the speaking cap on his trach and worked with him to make some sounds.  We heard a couple low growl sounds.  Each day this should get better as well.

Then the Trauma team stopped by and we were delighted to see one of our favorite docs.  It was great to see her back on rotation.  She thought the wound around his feeding tube looked good and decided to switch out his size 8 trach to a size 6.  We were so excited as this is just one step closer to eventually getting the trach out.  This smaller size trach should make it a little easier for him to try to talk.  The doc decided to have another x-ray taken to take a look at his belly.  It confirmed that his system is still backed up.  So far he hasn’t been able to relieve himself.  This is causing stress to his body.  I really hope we can reach a turning point tonight.

Another one of his ICU nurses came to visit him.  It was great to see her again. Jackie gave her a small wave.

It’s now getting late and Jackie just got sick twice within the last three hours.  The doc on call is going to stop by and check in on him.  Jackie just needs some relief from this constant struggle with his stomach.

Please know your prayers are wrapped around Jackie and giving him the strength to get through each new day of this journey.

Back at the hospital. It felt really good to sleep for 6 straight hours.  Jackie also had a fairly restful night.  His system is starting to move, our hope is that it continues throughout the day.

They are trying to keep two active IV sites in his arms.  The IV Therapy team just left and successfully replaced the older of the two IV sites.

The nurses continue to try to space his meds out a bit so he is not getting all of them first thing in the morning.

We are looking forward to another busy week full of many baby steps forward. I’m sure I will have a larger post tonight.    Thanks for keeping the positive thoughts and prayers coming.

Jackie sat in his chair for a little over an hour.  We asked him if he was tired, we got the thumbs up so put him back in bed.  His body still has a lot to eliminate which is a large part of the of the reason why his body is not digesting  his tube feeds well.  Many meds and measures have been taken to help the process move along.  It is slowly starting to work.

As Jackie continues to come out of the fog he is becoming very aware of conversations and the environment around him.  He is also aware of his trach.
We keep telling him we are working with the docs to make sure it can be removed as soon as possible.

Jackie got sick again tonight.  It seems as if is related to his coughing and gag reflex.  Until the trach is removed this could continue.  I am praying for some type of solution.

Even though Jim and I get a little bit of sleep here and there, we realize it is not enough to sustain us.  Our care for Jackie is just going to increase with each and every day.  We decided if we could get at least one good nights sleep a week it would help.  We were going to reach out to Nick one of Jackie’s ICU nurses.  You may remember his name from a previous post.  He is the nurse who reminds us of Jackie’s friend Sean.  Nick ended up stopping by to visit Jackie and said he could sit with Jackie tonight.  I must say, as I write this, it feels like the first time I ever had a sitter for Jackie when he was little.  I even had a list of things to go over with Nick when we left.  Between Nick stepping in as a companion for Jackie tonight and Sue his nurse, Jackie is in excellent hands.  I don’t think I will have much time to worry as I am sure I will be fast asleep as soon as my head hits the pillow.

Here’s to restful night for Jackie and good ole Mom and Dad.

Sweet dreams to all.

Today is three weeks since we first came to Geisinger.  Hard to believe.  My mind sometimes goes down the ‘Why Jackie’ path.  It would be so easy to dwell there, it would feel so good to focus on the anger.  Ultimately we force ourselves to focus on one and only one thing – Jackie.  We cannot change or explain why we are here, we can only stay as positive as we can to help Jackie get well.

The struggle with getting Jackie to maintain the needed nutrition levels has been a daily challenge.  Digestive and bowel issues continue.  We are now starting to increase his nutritional intake amount again since it was lowered over night.  The docs and nurses are doing everything they can to ensure Jackie does not get sick.

When the doc came in for his morning rounds he had some questions relating to Jackie’s condition.  I said let’s just ask Jackie.  Through a series of yes/no questions and the use of thumbs up/down we were able to determine that Jackie’s stomach hurt and he was nauseous.  Meds were given to help and the X-ray team came to his room for a closer look.  The Trauma team also came to the room to evaluate.  They read the X-ray and adjusted some of Jackie’s meds.  We were able to meet the Trauma doc who worked on Jackie the night he came in.  We thanked her for everything she did that night.

It’s time to jump start Jackie’s digestive system once again.  Plans are to get Jackie out in his chair this afternoon.  Jim and I will do some exercises with Jackie in the early evening.

Our hope is that in the next day or two we can move Jackie to a smaller sized trach.  Even though he will still need to use a speaking cap to talk, it should allow more air to pass by the trach tube and vocal chords.  Next step after that will be to remove the trach completely.  I will be dancing up and down the halls when that day comes!!

Will post again later tonight.

The rest of the day went better.  Jackie’s tube feedings  were stopped for a while to give his system a chance to digest what was already there.

Even though the PT team wasn’t in, the staff thought it would help Jackie’s  digestive system to start working if they moved him to his chair.  Success, Jackie’s system cleaned itself out. He was on the chair for about an hour.  His tube feeds were restarted at a lower level.

Jackie’s legs are now getting active as he lays in his bed.  He seems to move his right leg more than his left.  Any and all activity is good!

Later this evening it seemed like his stomach was slow to process again.  His feedings were turned off for a short time and then started up again.

Jackie’s neurological responses are getting more consistent.  There are still times when he is asked to do something that he has done before and he doesn’t.  This is all part of the marathon to recovery not the sprint.

We have all been working with Jackie to continue his neuro development.  Jim had taught him how to do a fist bump.  Lindsay and Florent added the explosion at the end.  Very cool!  His eyes are continuing to open on a more frequent basis.  Even though they have still not opened the whole way, it does seem like he is trying to look at us.

Lindsay and Florent had to head back home today.  As a parent, you can only hope that your children get along, especially as young adults.  I can’t wait to tell Jackie how wonderful and strong his sister is.  She stayed in the room holding his hand even when his trach was suctioned.  Believe me, this is something I hope you will never have to see a loved one go through.  I am so proud of Lindsay and really enjoyed my time with Florent during the night shift.

I truly believe Jackie’s progress is a result of prayer and the care he has been receiving the entire time he has been in the hospital.  Keep the positive thoughts and prayers coming.  They are working! PTL

Florent and I just left your hospital room and are now headed back on the scenic drive towards MD. For some reason I always think that leaving you, mom and dad will get easier but I am wrong about that every time..especially today.

This week was full of surprises, progress, hurtles and lots of time to talk about just about everything. I’m sure you were tired of hearing our voices by the end of each day, it’s exhausting for you just to keep your eyes open right now. You started playing catch with us, doing a pretty awesome fist bump with explosion and some high fives. We saw you try time after time to do the I love you hand sign too. You’re getting pretty good!

To most people these little peace signs, fist bumps and high fives all seem so insignificant but it is truly incredible how much those mean to us. It means you’re getting stronger, learning commands, retaining information and waking up more each day. I tried my best to be strong this week and managed it up until our last goodbye today. Sure, we’ll be back on Saturday but it didn’t stop the I’ll miss you all a lot tears from flowing after you gave me the I love you sign when I said goodbye for now, see you soon.

Love you so much and more each day. We expect some cool tricks and maybe even a walk or two by the time we come back. Work hard, don’t give up and I’ll see you again soon!

– Sis

Double Duty – Lindsay and Florent split up and joined us for the night shift.  It was not only nice to have company but also great for Jackie to spend some extra time with them.  

Once again he had a fairly peaceful night.  I think he is actually starting to get his nights and days straight.  He is getting strong.  We are constantly bedside to watch and hold his hands so he does not play with his IV or trach tube.  He is also getting curious with his face.  We let him gently explore, but don’t want him to scratch his face or bump his nose. If his hand moves to a certain area we try to scratch it for him as best as we can.

At one of Jackie’s Speech Therapy sessions Lenora showed Jackie sign language for I Love You.  Jackie is familiar with this sign as we use it at home all the time.  She molded his hands for him because he was not able to do it on his own.  At the end of Jim and Lindsay’s shift this morning he made the sign on his own for the very first time. PTL

Jim and I are going to work with Jackie today on the exercises Eric gave us for his arms and legs.  This way he will be ready for PT on Monday.

I was getting ready to post this update when Jackie got sick.  His digestive system seems to be a constant struggle.  Some days are good others bad.  Today is one of those days.  When he gets sick we have to get the Respiratory Therapy team in his room quickly to suction his trach to ensure he did not aspirate anything.  Fortunately he was ok.

Just like Jackie has good and bad days we do too.  I constantly want to turn back the hands of time but know it is impossible.  I definitely have what I like to call my break down moments, but also know it is so important to stay strong and very positive when in the room with Jackie. We have begun  holding conversations with docs and nurses outside the room so he cannot hear us.  Positivity is key!

I always remember every now and then getting an email or having a conversation that would give me a needed reality check.  Every minute of every day is a reality check for us.  Please try to stay positive when your days don’t go the way you planned and never take things for granted.  Laugh at the things that don’t go right and always keep the faith.

Will post again later tonight.

After sitting on the therapeutic chair for a while, it was time to move Jackie back in bed.  As always, he was very tired from his PT work out.  Even sitting in the chair tires him out.  We kept things quiet so he could rest for a while.

The Speech Therapy team stopped by and wanted us to let them know when Jackie was more awake.  Since sessions are only Monday through Friday, today was going to be the last day they could work with him until Monday.  They wanted the session to be productive.

Around 12:30 Jackie’s eyes cracked open and his hands became busy.  It was time to page Lenora. The session was the longest to date and successful.  Lenora placed a speaking valve on the opening to the trach.  She had done this during a previous session, but Jackie was unable to keep it on for long. It creates a different breathing sensation that Jackie will need to get used to in order to be able to talk.  Jackie tolerated the cap for a longer period of time and with coaching from Lenora was able to produce two small growls.  He is also starting to cough with his mouth open and Lenora mentioned that at times he appears to be swallowing.  All positive signs!

We also noticed that Jackie is starting to lift his head slightly off the pillow.  It has only happened a few times but I’m hoping it continues with consistency.  Because a portion of both sides of Jackie’s skull has been removed the staff has to be very careful when they move him.  Becoming more mobile on his own will help the staff as well.

It took a while, but Jackie is finally at the therapeutic level for his blood thinning meds.  We are hoping that he stays there as it will mean a longer time in between blood draws.

We are beginning to research the next phase of Jackie’s recovery.  The two facilities we are looking at are in the Philadelphia area.  Jim and I are going to try to visit both places on the same day in the coming weeks.  We will work to provide extra care for Jackie while we are gone.  More to come on this phase.

We are so blessed and thankful for the care Jackie has received so far and are continually overwhelmed with gratitude for all the support we are receiving.   It has helped us in so many ways.  We hope that in some way we will be able to pay it forward in the future.

A restful night has led to a good start of the day.

Besides the necessary vital checks, blood draws, meds and bladder scans, Jackie’s night was for the most part restful. The last hour and a half of Jim’s shift Jackie woke up a bit.  Jackie would release the stress ball and Jim coached him to open his hand so he could throw it back in.  His eyes were slightly open.  It was wonderful to say good morning and peer into my son’s eyes once again even if it was just a slight glimpse of them.

Tara and Eric (PT & OT) heard he was awake and seized the moment.  They came in and sat him on the side of the bed.  As I mentioned before this is totally assisted by them, one on the back and one in the front of Jackie.  He worked very hard today.  He raised 1-5 fingers and struggled a bit but held up all 10.  They stretch him and have been trying to help Jackie hold his head up on his own.  As they work with him, Jackie’s results help drive the next set of exercises and as always, his heart rate determines the length of the session.  Jackie gave a thumbs up that he was tired and they moved him into the therapeutic chair.  So proud of his strength.  So blessed and grateful for this chance to make him whole again.

We are hoping to let Jackie rest a little so we can have a productive Speech Therapy session later today.

Thanks as always for sending positive thoughts and prayers our way.  I’ll post again tonight. I hope your night was restful – make it a good day!