Surgery Update

Jackie is out of surgery and according to the doc it went well.  PTL!

Jackie was taken from recovery to get a CAT scan.  The lumbar drain is still in place and will be used if necessary to drain any excess spinal fluid that his body does not eliminate and process on its own.

We now take things one day at a time, closely watching the pressure in his brain.  If we find that his body is unable to drain the excess fluid we will move to the next step of the plan. We will cross that hurdle when we get to it.

We feel very blessed for the medical teams that have worked on him since we have been here.  Several OR employees who assisted in Jackie’s first surgery were also assisting today.   We thank you and the docs for taking such good care of our precious Jackie.

Right before Jackie went into surgery, we called Lindsay and held up the phone to his ear.  After I took the phone away, Jackie started to cry.  I’m sure Lindsay’s voice comforted him and gave him added strength to get through the surgery.

I’ll post again tonight.

Jackie is tolerating the drain well.  He just showed signs of some discomfort so the nurse plans to give him some Tylenol.  Every hour she has been releasing spinal fluid from his drain.

The ST team stopped by.  We did not use the speaking valve.  Lenora continued her work with Jackie on intentional swallowing using very small pieces of ice.  She also cleaned his teeth and was able to clean a small portion of his tongue.  He did not like that.  At this point he is still unable to stick his tongue out.

Jackie has lost weight.  I will be glad when he is back to his tube feeds and eventually eating real food again.  He definitely needs to put some pounds back on.

Jackie is getting a new roommate. I am hoping there is not too much activity on the other side of the curtain tonight.

His surgery to replace the bone flaps is scheduled for 9am tomorrow morning.

Thanks for sending positive thoughts and prayers our way.

The Plan Continues…

Jackie’s night was a little more restless but considering the new surroundings he did well.  This morning we talked him through the procedure he was getting and explained how he would have to be positioned to get the drain in.

They created a sterile environment and did the procedure at his bed. Everything went well.  PTL. The drain was placed in his spine and is currently clamped shut.  Each  hour a certain amount of spinal fluid will be released into a measuring bag hanging on an IV pole.  This should help drain some of the excess fluid from his brain.

The docs feel this should drain enough fluid in order to put his skull bone flaps back in.  The surgery is scheduled for tomorrow.  Initially we thought we would have to wait longer to have them replaced.  I’ll share more details about the surgery in my next posts.

We are now working with the Geisinger case worker to coordinate Jackie’s transition to Magee.  We want to get everything started so we are ready to go when he is.

I am learning how to handle transitions better but will always be Jackie’s voracious advocate.  I’ll post again later tonight.

Jackie, this week has begun quite like those in the early mile of your marathon. It has been a roller-coaster of emotions day in and day out. Florent and I were able to be there with you and see first-hand the wonders of recovery and saw amazing progress in the days we were apart from you last week. I think, no I know, that is what is making this more difficult than other days to be away from your side. It isn’t fair what happened to you and I will live each day haunted by what was done. However, nothing can change the past so the best way to go about the days is to accept what you can’t change and not waste energy on anything but moving forward, making the most of what we now have in front of us. You are still here to laugh with, talk to, say I love you – in your own way, play catch with, share stories and most importantly fist bumping with explosion (obviously).

Right now you are getting ready to jump through another obstacle on your marathon run but know that you will get through this, we will get through this. As a part of the Lithgow family you are already aware that quitting or giving up is not in our vocabulary. We keep fighting, running, jumping and pacing ourselves as best we can to reach that finish line. Some day, sooner rather than later I hope, you will be able to pace yourself in a different way. You will get the opportunity to walk and talk again just like old times.

You are loved by so many people in this world and have continued to inspire us all to live the best life we possibly can. Nothing is more important than love, family, strength and hope in good things to come. I wish every day that I could switch places with you and take all of your confusion, frustration and pain away even if it is just for a moment. You did not deserve this and I am so, so sorry that you ever had to go through this. You are my hero, little brother.

You got this and every new obstacle that may come your way. Hang in there, everything will be okay.

Love you and miss you so much,

– Sis

Transitions

It is now almost 11pm and we just got settled into our room.  We are in a semi-private room, separated by a curtain in the Special Care Unit on the 4th floor.  It is a tight space with just enough room for one chair on either side of Jackie’s bed.  This area is one step down from the Intensive Care Unit.  The sounds of the bells and alarms is similar to the ICU.  We are hoping to get one of the two private rooms if they become available.  This is our third transition to a different room since we have been in the hospital.  Considering all the added stimulations, Jackie is hanging in there.

We will miss the friends we have made at Select Specialty and thank them for providing such loving care during Jackie’s stay with them.

They have stopped his blood thinning meds in preparation for the procedure tomorrow.  His nutritional feedings have also been stopped.

Thank you for continuing to keep Jackie in your thoughts and prayers.  It is still best if Jackie does not have any visitors the rest of this week as we get through this next phase of his treatment.  I will post again tomorrow.

A Plan

As we were waiting to move to Jackie’s new room, I decided that I would let everyone know we still did not have any additional information than what I had shared last night.  Just as I was getting ready to publish the new post the neurosurgeon who performed Jackie’s surgery walked in.

We now have a plan.  We will move to his new room sometime later today.  Tomorrow Jackie will have the Lumbar drain inserted.  The Neuro team will keep a close eye on the drainage and we will go from there.  There are additional steps in the plan, which I will share as they unfold.  It was so nice to be able to talk with and give a big hug to one of the surgeons who has given Jackie a chance to recover.

Jackie slept his usual 3 hours and was active for the remainder of the night.  He was very strong and determined to itch his head.  For many reasons, the docs do not want him to do that.  This creates some interesting moments for us as Jackie still has good strength in his right arm.  This is something to be celebrated.

Jackie seems like he is feeling a little better today.  His heart rate and blood pressure are still a little higher than usual.  Jim actually got him to laugh during a thumb wrestling session this morning.  We haven’t seen that for three days.  I’m grateful Jackie seems to be stronger today as he heads into this procedure.

We are so grateful for all of your support.  Thanks for your positive thoughts and prayers.  Will provide an update tonight.

A side step

Jackie did not seem like he felt well today.  In fact we noticed that over the weekend his heart rate was elevated more than usual and it just seemed liked something wasn’t right.  We attributed it to possible over stimulation from two busy days of visitors, but today we realized it must be something else.  He does not seem to be as alert and his responses although still there were slowing down.

The PT team came in and started working with him.  They were off this weekend and also noticed a change in Jackie.  Their session was cut short due to his elevated heart rate and he also got sick.  He was given something to settle his stomach which also helped him relax while sitting in his chair.

Lenora came in and decided to have a short session.  Jackie did not tolerate the speaking valve very well today so she took it off.  He had it on initially when he started his PT session and we actually heard some small growls but we soon had to take it off due to his coughing.  A bright spot today was when Jackie was able to move a very small piece of ice around in his mouth and swallow it. A big baby step! PTL

We moved Jackie back in bed and he rested on and off.  His system was still not moving so more meds were given to help.

The Neuro team stopped by and since Grandma and Grandpa were here we went into the waiting room to talk.  The collection of fluid in Jackie’s brain was getting larger.  This is starting to impair his neuro functions.  The team has decided to put a drain in his back to drain off some of the excess fluid.  The hope is that it will promote drainage from the brain.  We will be discharged from the Specialty Hospital and readmitted to Geisinger.  This move is scheduled for tomorrow morning as the procedure will be done sometime tomorrow.  After a couple days the team should be able to tell if the drain is working and we will go from there.  The doc said we shouldn’t think of this as a step back, but instead consider it a side step.

We still plan to move to Magee, it is just going to be delayed at this point.

Thank you for continuing to keep Jackie in your thoughts and prayers.  I’ll provide more updates as the day progresses tomorrow.  It is best if Jackie does not have any visitors the rest of this week as we get through this next phase of his treatment.  Thanks for understanding.

Anticipation

Jackie followed the same pattern last night.  He slept for about 3.5 hours with just brief periods of waking.  He then woke up and took a couple little naps, but none very long.  We will continue to work toward longer rest periods at night.  He is taking a nap now.

The hospital is alive again. Waiting rooms, lobby areas, the cafeteria and even Jackie’s floor is buzzing with activity.  The hospital work week begins.

From a nutritional perspective it was a good night.  Jackie’s residuals, a check for the amount of stomach content, was low enough to keep him at the higher infusion rate.  PTL. He only has a small step to go to get back up to his goal.  I plan to speak with the dietitian this morning.

We decided to start working on Jackie’s system early today to give his body time to work.  We are hoping with his upcoming PT session, it will help get things moving.

We are anticipating a visit from the Neuro team.  We are interested in knowing their thoughts for next steps.  They will need to decide if any procedures are necessary to address the extra fluid in Jackie’s brain prior to releasing him to go to Magee.  Their decision will determine how much longer we stay here.

The sun is shining in on Jackie’s face and has to feel good.  I wait with anticipation for the day he can feel a breeze and be out in the fresh air and sunshine again.  Don’t complain about the brightness of the sun in your eyes, put on your shades and revel in its beauty and warmth.

I’ll post again tonight.

We were able to get Jackie back in the chair again.  He seemed a little more comfortable this time.  They move Jackie to the chair in the same way they move him to the shower transport table, with a board and a series of pulls with the sheets that he is laying on.  It is a science and the staff does a nice job of ensuring his safety during the entire process.

Before he was moved he was given something to help his system move.  When I left for my nap, nothing had happened.  I said a little prayer when I got back to the room for it to work.  The next step to helping him is not pleasant but would be necessary if things didn’t move.  PTL – when I arrived back in his room there was success nearly 30 minutes prior to when the next procedure was to take place.  I know this seems crazy to be celebrating small things like this, but in actuality they are big wins.

Our Trauma doc stopped in to check on Jackie.  If you remember this is the doc who Jackie shared a particular hand gesture with and then laughed.  She thought everything was going as could be expected and when she left the room she said “I love you” and Jackie replied with the sign language symbol that matched her words.  We feel blessed and comforted to be under her care.

There was only one other time today that Jackie shared the I Love You sign.  It was when Jackie was in the chair for the first time.  Lindsay was sitting a little distance from Jackie and randomly displayed the sign without saying a word.  Jackie must have seen her and before she knew it, he replied with the same gesture.

I am hoping for a peaceful nights rest for Jackie as tomorrow is the start of a new week with therapy sessions and doc visits.

I’m sure I will have more updates tomorrow.  Don’t forget to tell your loved ones how you feel about them, even if it is only with a simple hand gesture.

One Month

Today marks one month since Jackie was the victim of a senseless act of violence.  One random moment that has changed so many lives.  I refuse to let the anger win.  I cannot even comprehend how one human being can do this to another.  We simply move forward thinking positively, praying and providing the best care that we can for Jackie.  His strength and determination will get him to the finish line.

We played soft music last night and dimmed the lights. Jackie slept for about 3 hours while I was with him.  When Jim started his shift at 2:30am Jackie slept for another half hour and stayed awake until I returned at 7:30am.  When I walked into the room and saw the football on the bed, I figured the boys were busy.

When I was with Jackie by myself this morning, I started to figure out things he was trying to tell me.  He lifted his head off the pillow and I asked him if he wanted his head raised on the bed, he gave me the thumbs up.  Once he learns how to verbalize through the speaking valve it will be easier for him to communicate and I think he will be less frustrated.  Can’t imagine how it must feel to be trapped in a body that is struggling with just basic functions.

Jackie was already out in his chair for two hours and is back in bed.  He didn’t seem as comfortable as he usually does in his chair.  His head was sweating under his hard foam helmet.  Any time he is out of bed, the helmet has to be on.

At this point he is tolerating his nutrition.  We just bumped him up to a higher level. I plan to speak with the nutritionist tomorrow to review and confirm the goal.

We have had a steady stream of visitors today, thus the late post.  Lindsay and Florent headed back home.  I could tell Jackie was sad when they left.  We plan to stay connected through FaceTime or simply by putting them on speaker phone.

Thanks for your continued positive thoughts and prayers.  I’ll post again tonight.