No Rest For The Weary

Monday morning started with early rounds from the docs.  Jackie’s neurosurgeon team was first.  Dr. E. and team felt Jackie was stable enough to head back to Magee. PTL Now it was up to several team evaluations, insurance approval and our 5th readmission back to Magee. We had a feeling by the time all the evaluations were done we would be returning on Tuesday, but by 4pm on Monday we were heading back to Magee.  It felt so good to be leaving the hospital, it had been a long, hard two weeks for Jackie.

The staff greeted us when we returned to Magee. After going through all the steps to admission and getting meds worked out through Magee’s pharmacy, Jackie finally settled in around 10:30pm.  It was another long day.  The best part was the expression on Jackie’s face when he laid his head on his memory foam pillow.

Tuesday came early.  Just as Jefferson staffers had to do evaluations for discharge, Magee staffers had to do new assessments for admission.  Paula started the day with an ADL session.  Jackie had only been up twice in the two weeks he was in the hospital.  Jim and I sat him on the edge of the bed for just a minute or two the day prior to his final surgery, and the PT, OT team had him sitting on the side of the bed for at least 10 minutes on Monday. Jackie is not holding his head up like he used to before, and his ankles are not currently able to keep his feet in the correct angle for walking.  Between laying flat for many days and then going through days of full body spasms Jackie’s body is tight and in need of a new plan for recovery.  His left side is still impaired but we have seen slight movement in both his left arm and leg post surgery. Very slight movement, but we will take it! PTL

Jackie headed to PT for his evaluation.  Erin agreed the hospital stay set Jackie back but she was also impressed with some of the skills Jackie was still doing well, like his standing balance.  PTL she will start formulating plans to jump-start Jackie’s therapy.  Jackie took a nap immediately after PT.  I was amazed he was able to make it this far.  While he was napping, Jackie received some nutrition through his new peg tube.  When he woke up it was time for speech.

It took a while but Becca was able to get him to say some words.  She also worked on swallowing.  It seems that everything Jackie is doing is delayed.  I’m not sure if that is due to his new meds or if it is a result of just being tired from everything he went through in the hospital.  Time and patience will give us the answers.

After speech Paula came back to work with Jackie on his transfers. After she was done we agreed that it would be best and safer for everyone if we used the lift device when getting Jackie in the shower chair.  All other transfers could be down like before.  As much as this was disappointing, it should only be for a short while and is the best thing to do.Tired out once again, Jackie took another nap.  Then we moved him to the shower chair, and then back to bed.

Jackie made it through the day much better than I had expected.  I think any of us would still be lying in bed or on the couch after a hospital stay similar to Jackie’s.  With each turn the marathon seems to gain miles. TBI is in control of the GPS.  Jackie just needs to stay strong through the bumpy roads and keep focusing on the smooth pavement that will eventually allow him to cross the finish line.

Laughter

The hospital was unusually active this weekend, especially from a staff perspective.  Jefferson was updating its computer systems and during the outage the nurses had to log and track patient meds and activity via hard copy until the system was back up. The younger nurses were getting a taste of how charting used to be done in the old days.  I have always kept track of Jackie’s meds, and confirm the dosage prior to administration.  Another difference this weekend was the fact that our neurosurgeon was on.  It was great to be able to check in with him both mornings during the weekend.  We all agreed that we would like to get Jackie back to Magee as soon as possible. PTL We will start getting the transfer paperwork started so that when the day comes we will be ready.  Jackie did not speak to Dr. E, but did show some body movement and facial expressions.

The day was low key which was great for Jackie.  Even when we get back to Magee, it is going to take a while for Jackie to build up his stamina. Since Jim and I are back to shift sleeping overnight, we try to get as many naps in as we possibly can.

I got a text later in the afternoon that my sisters and my one Niece and her family were in the area and if ok would stop by for a quick visit.  You may remember me writing about a baby named Owen, who is now almost one year old. Jackie had really enjoyed visiting with Owen at Magee and his response was the same today.  As soon as Owen came into the room Jackie had a huge smile on his face. I haven’t seen him laugh that hard since prior to his surgeries.  PTL. Jackie also enjoyed touching Owen’s feet and hands.  The visit was short but just right.  Jackie was able to forget about his condition for a while and enjoy the company of an adorable, bundle of energy.  Jim and I reminisced about how Jackie was just like Owen when he was little; always moving.

We finished out the day watching some old NCIS episodes and then football.  Another week starts tomorrow, one with hope for more recovery, more energy and more laughter.

Baby Steps Are Back

Friday and Saturday were good days. Good days with baby steps! PTL. Don’t get me wrong, Jackie was still having muscle spasms but he has been able to work through most of them without extra medication. Overall, the spasms are less frequent and are getting shorter in duration. PTL  Jackie is learning to deal with them, even though it is obvious how painful they are.

Our neurosurgeon was able to see Jackie when he was wide awake because he was just getting through one of his muscle spasms.  The spasm subsided and Jackie was able to have a good exam.  His right side is moving again and he spoke some words PTL. Dr E, Jim and I believe it is just going to take time for Jackie to get back on track. The small improvements we are seeing will help him get there.  Prayers, positive thoughts and patience continue to be our mantra.

It is so nice seeing all of the nurses again that have cared for Jackie in the past.  We like to share videos and pics of Jackie from Magee.  It is not very often that these nurses get to see patients after their hospital stay.  They also enjoy hearing Jackie’s voice when we can get him to say hi.  We know Jackie is getting better because we saw a flirty little grin appear on his face when two of the younger nurses were talking with him about the times they took care of him in April.  We actually watched a funny video of me playing my ukulele and one of the nurses singing and snapping with Jackie.  I’m hoping the video jogged good memories for Jackie.

Late Saturday afternoon Jackie was transferred back to the Intermediate Neurological Intensive Care Unit. This is a great sign that he just needs a little bit more healing before we can go back to Magee. Magee is just shy of a mile away from Jefferson so once we get the green light to head out, follow ups will be easy.

Besides the fact that Jackie was put on a short course of antibiotics for a small infection, he is starting to make a slow but noticeable rebound.  We know that all of your positive thoughts and prayers are being heard.  We just need to be patient and let the gift of time help Jackie take the baby steps he needs to get back home.

Mom vs Medicine

I feel as though I am a fairly intelligent individual.  When I need to know more about something I do the research or reach out to experts for advice.  Both Jim and I have done our own research during our bedside shifts here at Jefferson.  We are learning more every day about TBI and muscle spasms that they call storming.  We listen to the several teams of docs that are now following Jackie.  We ask lots of questions and seem to agree with most everything that is recommended.  The Mom factor is the tough part to add to the equation.  When you see your child so sick for so long, the Mama Bear instinct comes out full force.  I struggle with the balance between the fact that we know Jackie better than anyone else and the need to let the docs do their jobs.  After all this is what they have studied and have been doing day in and day out for years.  For the most part they do listen to our concerns and ultimately we put our trust in our neurosurgeon who knows Jackie better than any other doc here at Jeff.  Dr. K at Magee knows Jackie best.  It is just hard as a Mom and a Dad to see all the new meds that Jackie is taking and hoping that they are the ones that will make him better.

The early morning hours of Jackie’s day were filled with two major spasms that needed medication to slow down.  We are trying to time doc visits together as much as possible to reduce the total amount of spasms Jackie has each day.  The slightest bit of stimulation sets off a spasm.  Mama Bear enters stage again.  Its so tough to watch the nurses and docs do their jobs when I know the spasms and pain for Jackie will follow.  But I also know what they are doing is necessary to ensure Jackies medical stability.

After the last round of doctors were through it was agreed that Jackie would try a new medicine to help keep his heart rate under control.  Today is the first day for the new drug.

Jackie rested between spasms for the balance of the day.  We were able to talk him through a couple spasms without having to sedate him. PTL In fact we only had to medicate him twice the rest of the day.  The spasms are still happening, but the new med seems to be working already.  The lower heart rate gives Jackie a longer period of time to work through the spasms.  We are hoping this trend continues and we can use pain meds more than the ones that are sedating. We are ultimately hoping the spasms go away.  Even though the docs are not certain, they believe all the surgeries and pain may have set them off.  At this point, the other tests are coming back fine. PTL

Jackie is without question exhausted. When we bathed him he had a spasm and we could see on his thin body the actual tightening of all the muscle groups. I can’t even imagine his pain level.  Our goal is to keep him as positive as we can. He has been through more than several people put together have been through in their lives.  We hope he understands that with time things will get better.

Life is full of surprises and unexpected turns.  Be kind, appreciate days without pain and keep sending positive thoughts to Philly.

Just Breathe

Jackie woke up to the voice of a Neurological resident.  He was in the process of doing an exam that would be followed up by an entire team visit.  This stimulation threw Jackie into a major spasm.  Drug therapy was administered right away to break the spasm.  Ultimately the meds, caused Jackie to sleep for most of the day.

While he slept he continued to get nutrition through his new peg and was finally getting back on track with all of his daily meds.  These are also put down the peg site.

As assumed, many more tests and blood draws occurred today.  Jackie also had another spinal tap.  The result was still within the normal range.  PTL.

It is now a waiting game that requires much patience.  We will need to continue to deal with the spasms until we find an answer.  It seems that every time Jackie is stimulated or wakes up he goes into a spasm.  We pray answers will be found soon.

Between yesterday and today, all three of Jackie’s therapists from Magee came to visit him.  Jackie was not very responsive for any of their visits, but I know he could tell they were there.  As much as we want to go home, we miss the team at Magee.  After all it has been our home away from home for the last three and a half months.  We are so fortunate to be blessed with their expertise and friendship.

As the night progressed and Jackie began to wake up. We tried to limit his med intake by talking him through simple things like just breathing.  In some cases this coaching helped Jackie stop the spasm from intensifying.  The spasms seem to be effecting every muscle group so I’m sure Jackie’s chest feels like he can’t breathe.

We worked with the nurse to finally get his head washed.  We were not sure if we were going to be able to get this done without a spasm taking over.  The warm water must have felt good as we were able to get everything done.

Ultimately more spasms occurred that Jackie could not break on his own and more meds had to be given to stop them.

TBI continues to throw Jackie curve balls.  Some he can see clearly and adjust and the others catch him and us by surprise.  Continue to appreciate the very simple things in life.  Take a deep breath when you feel your day is full of stress or drama and do your best to hit the curve balls head on.  Jackie is sure trying, even when it comes to taking a simple breath.

Taking Steps Back To Move Forward

We met with Jackie’s neurosurgical team Monday morning.  They are still keeping an eye on the pressure in Jackies head.  They decided to do a spinal tap.  Pressure was a high normal. PTL.  Follow up spinal taps will occur with plans of action ready to take place based on the results.  Jackie also had PT stop by and they did some stretching in bed.  Early Monday night Jackie’s muscle spasms and elevated heart rate intensified. With the help of many drugs, we were able to get him calmed down.  He was on the schedule to get another Peg (feeding tube) put in on Tuesday and we did not want anything to get in the way of the surgery.  Getting another peg in is one of the steps back we had to take in order for Jackie to move forward.  He needed nutrition badly and also had been unable to take some of the meds he needed by mouth.  The IV nutrition he was on was a bridge to the peg surgery and although it helped sustain him does not have many calories and has some risks associated with using it.

The last we had heard we were the final surgery case for Tuesday so anticipated a mid afternoon surgery time.  Ultimately, Jackie was able to get bumped up to the 1st or 2nd surgery of the day.  By 7am on Tuesday, we accompanied him to pre-op for his third surgery within a week.  This one was much shorter than the other two but he still would be having a tube inserted in his throat.  It was the best and safest approach for Jackie. The surgery was quick and successful.  PTL We were able to sit with Jackie in recovery and then followed him up to his room.  He rested for a while but then became agitated.  He was clearly in pain and the muscle spasms were starting to return with a vengeance.  By early evening Jackie’s spasms continued to worsen. He had to be transferred out of the Intermediate Neurological Intensive Care Unit to the actual NICU.  Many staffers worked on Jackie to get him back to a stable condition. He also had a CAT scan to make sure his head was ok.  It was. PTL

It was going to be another long, tough night for Jackie.  Through med management we were able to get through most of the night without major spasms.  Many blood tests were taken so we can start the process of finding the catalyst for the spasms.

Tomorrow I’m sure more tests will continue with hopefully an answer and plan to help Jackie get back on track.

Thank you for your continued positive thoughts and prayers.

Emerging From The Fog

PTL  – We are starting to see signs of improvement.  This mornings CAT scan was positive once again. Jackie even said Mom!! No other words were spoken, but one is enough for now. I was sitting across the room from him and held up the sign for I love you.  I could see he was trying to hold up the sign with his right hand.  His brain and body are just not ready to make the connection.  He was able to eat a couple ice chips today which is a baby step in the right direction.

He is still struggling with muscle spasms and IVs that don’t last long and need to be replaced.  I honestly don’t know how many more IVs he can get.  He currently has three in place.

I know I have mentioned this before, but we have been so blessed with wonderful staff everywhere we go.  There are not many positive things about being in the hospital.  The Jefferson staff is an exception.  We were able to get to know many of the nurses while Jackie was here for 44 days in April/May.  Some of our favorites have come to our room to visit us and some of them have been assigned to Jackie so we have been able to catch up.  There are a couple of them that have been following the blog and were expecting us.  We also had a CNA from Magee come visit us.  I had been staying in touch with our Jefferson therapists and we have been in contact with them since we are back.

This afternoon we watched the Eagles game on TV.  There were obviously interruptions and care that needed to be given to Jackie, but it was so nice and seemed normal.  Jim was thrilled because he was able to watch the game.  It was blocked out at home superseded by the Steelers game.  Being in Philly this long does have its advantages.

We Skyped with Linsday and Florent after the game.  Even though Jackie didn’t speak, it was comforting for him to see them and hear their voices.  We even caught him smiling. He tired easily so we kept the conversation short and plan to have more this week.

Tomorrow we should be able to confirm next steps.  There are plans in place and procedures that may need to be done before we can head back to Magee.  Jackie is ready to do whatever is necessary to ultimately get home!  Thanks for continuing to follow his journey and for cheering him along at each mile marker.

Time

Recovery has been slow.  Two major surgeries with only one day in between would set anyone back a couple days, not to mention someone with TBI.  Jackie is without a doubt staying as strong as he possibly can.  He still has not spoken a word and has shown very little movement in all of his extremities.  He also has not eaten.  We did get two smiles! PTL

We have worked with the docs and are addressing his nutritional needs.  We are also going to start working with hospital PT and OT teams to get Jackie’s body moving again.  CAT scans, blood work and vital and neuro checks are the main tools being used to ensure Jackie is staying stable.  The CAT scans continue to come back positive. PTL

His head dressing came off Saturday.  He has a mixture of sutures and staples this time.  He looks good, his swelling has gone down in his face and hands. PTL. He is still having intermittent muscle spasms which we are trying to resolve with stretching exercises.

Jackie just needs time to rally back.  Each new day will bring opportunities for more recovery and baby steps to get the marathon pace back up to speed.

Recovery Leads To More Surgery

Jackie’s recovery continued on Wednesday, but things were moving slow.  Jackie was still not talking and he was experiencing the discomfort of swelling and pain. He was able to eat some ice chips in the afternoon but struggled with even just a few bites of applesauce in the evening.  He hadn’t laughed since the surgery either which is something Jackie has always done throughout all of his recovery.  I didn’t blame him. He just got through major surgery.  At one point we thought he was feeling better, but that did not last long.  Wednesday night was a little more peaceful than the night before, but he still only had short periods of sleep here and there.

It was an early morning again.  Jackie was scheduled for a CAT scan Thursday morning at 4am.  We were hopeful the results would show the progress we were expecting.  On the contrary, within a couple hours of reading the scan, Jackie was back in surgery.  To say the least, we were devastated.  I had been telling Jackie that he had finally made it through all of his surgeries, but that was not the case.  Need I say it again, TBI causes havoc all the time.  There are no easy answers or plans that are sure wins when it comes to TBI.

Jackie came back to the room around 2:00pm after his second surgery in two days.  The docs will be running tests and watching him closely over the next couple of days.  We continue to live day by day guided by prayers, positive thoughts and patience.  Sometimes, ok most times lately, it is not easy.  But staying strong for Jackie is a must.  Jackie just needs a couple baby steps to get back on track.

Near the end of the day we were thrilled to have a visit from Dr.K from Magee. He stopped in to see Jackie on his way home from work.  It was great to see him and Jackie gave him the only thumbs up of the night.  PTL

Day Before and Surgery Update

It is so hard to believe it is September.  Jackie has been in the hospital straight through the back half of winter, all of spring and the entire summer.  It is a very long period of time comprised of many missed memories with friends and family.  I spoke with a Mom today who lost her son two days after he was assaulted.  She made me realize that there are always people suffering way more than yourself. It also made me realize that God has given Jackie a chance at recovery and we will continue to do everything we can to give him the best chance possible.  Tuesdays surgery will be yet another mile marker in the marathon.

Even though Monday was a holiday, Jackie was scheduled for three therapy sessions.  His first session started at 8am and was an ADL session with an OT therapist.  It was good timing because Jackie woke up with bad muscle spasms.  Nikki did some stretching exercises in bed and that relieved some of Jackie’s pain.  She then helped him get dressed and start his breakfast.  Jim and I took over when the session had ended.  After breakfast we went out to the second floor terrace for some sunshine. We reclined Jackie and he enjoyed feeling the warmth of the air as he closed his eyes and fell asleep.  We woke him after a short while and went up his room.  Erin was back and Jackie’s PT session was next.  Not long after Jackie went to the gym, Lindsay and Florent arrived.  We had a chance to catch up while Jackie finished his session.

After the session, Florent said goodbye and headed home.  Lindsay was spending the night and taking the train home on Tuesday night post surgery.  It was so wonderful for all of us to have Lindsay here.  Jackie especially loves her company.  The rest of Monday followed the same routine of naps and meals.  We were heading to the hospital at 4am Tuesday morning so we wanted to get Jackie settled into bed as soon as we could.  Once again he was struggling with muscle spasms, but the warm shower helped to calm them.  We were so glad we were all together as we were facing a big day on Tuesday.

The transportation company arrived at Magee on time and allowed all three of us to ride in the ambulance with Jackie.  This does not happen very often and we were thrilled to all be able to go to the hospital together.  We were the first to arrive in the pre-op area, this was short lived as within an hour the room was buzzing.  After a little over an hour here, we moved to the surgical floor where an IV was placed and we met with the anesthesia team as well as our neurosurgeon.  We had made it to the surgery and were anxiously ready for this next step to Jackie’s recovery.

If you have ever waited for a loved one while they are in surgery, you know that minutes seem like hours.  Jefferson has a large surgical waiting room and a notification screen similar to airports that gives you the progress of the patients.  You can track them from the OR through to recovery.  They also call the families with updates along the way.  We finally got the call that surgery was over. Our surgeon called us himself to let us know the surgery went well.  PTL. We took turns visiting him in recovery.  We wanted Lindsay to be able to visit as much as she could.  Jackie held her hand and wouldn’t let go.  The fact that she was there was a huge comfort to Jackie both prior to and after surgery.  It was getting close to the time Lindsay had to leave and Jackie was sleeping, fortunately the nurse had to wake him up so Lindsay could say goodbye.  It appeared that he almost started to cry and when she gave him the sign for I love you, he signed back. PTL.

We all shed tears.  Mostly tears of relief but also tears that Jackie continues to have to go through tough times to get to the finish line.  Grandma, Grandpa and Nana also took the train home.  The remainder of the night was restless for Jackie.  We are hoping Wednesday will be a day of healing.

I know so many of you said extra prayers yesterday and they worked.  Jackie’s surgery was a success.  We now go hour by hour and day by day as we set the new recovery plan that will hopefully get us home soon.

Thank you for your love and support.