Thursday, September 18

Small Victories

Jackie slept much better last night. He also tolerated his nutrition well throughout the night.  PTL. When he woke he was more verbal than he has been in a long time.  Right before we helped him get dressed he straightened his right leg, then to our astonishment we swear he purposefully straightened his left leg and crossed it over his right leg.  PTL. We continue to celebrate small victories and look forward to achieving small milestones that will eventually add up to the big milestone of getting Jackie through the last mile of this journey of recovery.

Becca is now seeing Jackie at 9am every day.  She had a cafeteria tray brought up so she could work with him on eating breakfast.  The session went well.  PTL. Jackie’s swallowing function is getting faster and more back to normal.  He even ate half of a bowl of oatmeal.  Becca has approved one meal a day for Jackie to eat from the cafeteria.  It is still a restricted diet but is one step in the direction of increasing meals by mouth and reducing tube feeds.  The nutrition team is following Jackie closely and plans to keep him on a high caloric daily nutrition regimen so that he has enough energy for therapy sessions as well as enough nutrition to put on some pounds.  He has lost quite a bit of weight again and it is time to put it back on.

Part of the new game plan for Jackie includes less naps during the day.  This is a lofty goal since Jackie still seems to be tired from his recent hospital stay.  He will need to pull all of the strength he can muster to achieve this. Since PT was an hour away, we kept Jackie in his chair and went out to the second floor terrace for warm sunshine and fresh air.  We reclined him back and he closed his eyes enjoying the simple comfort of sunshine on his face.  It was a beautiful day.

Erin picked him up next and took him to the gym.  She said he had a great workout.  She used the standing table to help get him as upright as possible for as long as possible.  Slowly but surely he is making his way back.

His new OT schedule allows him to take a nap prior to the session, but today Paula was going to see him early. Once again, we kept him in his chair and let him rest there.  He also had some afternoon meds and a bolus of nutrition that was administered through his peg tube.  Before we knew it, Paula came to the room to take Jackie to the gym.  The main goal of the session today was to take photos of the correct sleeping positions for Jackie.  Since he had so many muscle spasms in the hospital, it is important that when he is repositioned in bed every couple hours overnight,  it is done correctly.  Anything to help reduce muscle tightness or spasms is key.

At last, Jackie was able to take a nap.  As soon as Paula got him back to the room he was unlocking his seat belts.  He didn’t need to say a word, it was obvious he needed a break from his chair and a busy day of therapies.

When he woke up we had just enough time for a quick break on the second floor terrace.  Then it was time for a shower and shave.

Jackie was exhausted.  Getting in bed by 7pm may seem way too early for a 19 year old to turn in for the night, but with his new schedule it can’t come soon enough.

The course that lies ahead for Jackie is long and challenging, but the experienced staff at Magee will help guide Jackie, Jim and I through each mile.  Another new day is ahead with opportunities for small victories.  PTL.

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Wednesday, September 17

Game On

Jackie woke from a somewhat restless night.  Since we have been back at Magee we have been trying to max out Jackie’s nutritional needs through his feeding tube overnight.  Once again we were not successful. Jackie had stomach cramps and the feeds had to be turned off.  We were able to turn them back on very early in the morning but for only a short time.  Hoping to have a better night tonight, as nutritional needs are a huge part of his recovery.  Jackie is starting to eat a little on his own but at this point it is considered pleasure eating and does not have a significant impact on his total calories for the day.  Like before when he was on the feeding tube, the goal is to continually increase what he is eating by mouth and ultimately decrease the tube feeds to nothing.

Jackie went to Becca’s office for speech.  She continues to observe his cognitive vs motor skills during her sessions. Right now it is easier and faster for Jackie to answer questions with his fingers than to respond by voice. It will just take a while for his brain and body to recover and reconnect after this last set of surgeries.  Patience.  We have never been challenged with the need for so much patience in our lives until now.

Speech ran right into PT.  Erin tested Jackie’s endurance for laying on his stomach.  Having the feeding tube in adds a complexity to this exercise, but the therapists know how to handle every situation.  After the session was over Jackie was given lunch via his tube.  It is called a bolus feeding and is given to simulate eating a meal.  It also is packed with calories and nutrients.  This way Jackie can save his energy and put it toward therapy sessions instead of working so hard to eat as much as possible by mouth.

Paula worked with Jackie earlier than normal. She had him doing many things including standing and working on his posture.  Paula had him stand in front of a mirror which makes it easy for him to see what needs to be self corrected.  Speaking of vision, Jackie will be reevaluated to see if his vision has changed since his surgeries.  We anticipate this happening in the next couple days.

A nap was next on the agenda. Grandma and Grandpa were visiting and sat with Jackie while Jim and I met with our entire Magee team. Dr. K led the meeting which included 10+ Magee staffers.  It was the first time in many months that I sat at a large conference table for a meeting.  This used to be something I did all the time at work.  It felt oddly familiar yet totally different, if that makes any sense.  It was time to talk about the new plan for Jackie.   New strategies and goals are in place to help Jackie gain more independence.  Everyone on the team has a role and agreed on next steps. Weekly updates will keep the team on track. I was moved by the teams level of passion and commitment.  It completely reinforced our decision to bring Jackie here. PTL Hopefully Jackie will rise up to the challenge of the new plays that will drive this next phase of his recovery. It’s game day.

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Monday, September 15 – Tuesday, September 16

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.

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Sunday, September 14

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.

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Friday, September 12 – Saturday, September 13

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.

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Thursday, September 11

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.

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Wednesday, September 10

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.

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