May 28, 2015 – Day 21

We love all the emails and comments coming our way and the huge support from other people who have had similar injuries, and we want people to fully understand what type of injury we are dealing with.

Jared has a spinal CORD injury.  Yes, he fractured his C6, but he also damaged his spinal cord.  This is what makes a huge difference in his injury.  His entire nervous system was affected because the broken vertebrae (C6) impinged his spinal cord.  You can fracture (or break) your spine and not have a spinal cord injury.  You can have your bones fused (like I have) and it won’t affect your spinal cord.  We were given an analogy that explains it a little better.  “If you drop your cell phone in the water and then remove it and dry it out, it’s possible to get some of it to come back, but some functions may not work at all and some may not work like they used to.”  This is how a spinal CORD injury works.  The damage to the spinal cord is at a microscopic level and presently medical experts are unable to make repairs at that level.  This is why research into spinal cord injury is so important.  We need to understand the damage at a microscopic level in order to try and fix it.  When you slip a disc in your back, that affects your nervous system.  You get tingling and loss of function etc.  This is because the spinal cord is being pinched by a disc that is out of place.  I hope this helps people to fully understand the level of his injury.  We hear many stories of people with spinal fractures that return to normal life, that is because they did not have any spinal cord damage.  Jared has no feeling below his nipple line.  He doesn’t feel his legs, feet and toes.  He can feel his thumb and index finger but feeling diminishes as you go down the finger line to the pinky.  He can’t grip anything.  He can pull small things, like a straw, toward him with a clenched hand. He has wrist flexion, but no ability to control his fingers, they remain motionless.  He can scratch his nose with the side of his hand, but can’t apply pressure to anything with his fingers.  He has no trunk strength or control.  His voice is not as strong as it used to be as well, and he can’t functionally cough.  Also remember, no two spinal cord injuries are alike and everyone recovers at different rates and to different levels of functionality.

These last three weeks have been filled with tending to Jared; feeding him, sitting in his room trying to occupy his brilliant mind with things to pass the time, wiping his face, rubbing his sore back, arms and neck, making Kleenex corkscrews to clean out his nose, endless attempts to satisfy his cravings for food, helping him with his phone for what seems hours, constant adjustments to pillows and body position. Learning the wheelchair, up for 30 min, recline for 1 min, (to prevent pressure sores) proper alignment etc.  You forget how much you do on your own- all through the day- and right now he is pretty helpless.  I know he is very frustrated yet he is Jared.  Like his father, he is patient, calm and always concerned how others are doing.  I’m not sure I could be so patient and kind if I was in his position.

The last couple of days have been very hard.  Jared has been sick, vomiting and just feeling really horrible.  To watch someone vomit and not be able to move to help themselves at all, and to fear aspiration, and all that comes with that, is quite scary.  John and I are a team with Jared’s care.  We keep each other going and keep Jared going.  Monday is our meeting with the Jared’s medical team.  Then we will understand more of what is to be expected in the future and what is expected for our stay at Shepherd.    For now, thoughts of ongoing care for Jared are daunting.  His morning bowel program, turning him every three hours to prevent pressure sores when he is in bed.  So many things.  It will be a challenge, but one we will deal with and every day will be better.  Jared is an amazing kid, and together, we will get through this.  His brother Logan is at home, dealing with all this on his own, and will come to Atlanta soon.  He is planning on sharing the apartment at home with Jared and helping us with his care.  Also, hopefully, Jared will be back at college soon and things will move forward!

Today he got into the gym for the first time and got a well deserved massage!  He is having severe increased sensitivity to sound and vibration.  Different noises bother him in different ways and loud noises can’t be tolerated right now.

We continue to meet more families as well which is helping lift Jared’s spirits.  Next week when I go home, John will move into Jared’s room so as not to burn up our free nights in the residential housing.  Shepherd gives their patients one month free of housing when you are a patient here, and one caregiver is allowed to live in the room with the patient.  Thus, there are a lot of parents sleeping in their kids rooms around here!  And everyone is going through the same dramatic halt in their lives.

Monday May 25 – Memorial Day

Happy Memorial Day!  God bless our Veterans and those who are currently serving.  Shepherd Center has an entire wing dedicated to injured Veterans!

Yesterday I crashed.  My body completely shut down.  Migraine headache, vomiting and 16hrs in bed.  Yuck.  Phew, Glad that’s over.  Onward and Upward.  Still a little woozy today, but no headache – woohoo.  John is like an energizer bunny, although my crashing helped him to stay with me and nap for a bit yesterday, so we both are a bit recharged.

We have only been here for a few days and those days were mostly low staffed days, so we are just learning our roles here at Shepherd.  It seems family is a HUGE part of this whole process.  We are expected to feed Jared at mealtime, and when he moves to the floor, we are expected to help him with his daily regimen.  Bathing, bowel and bladder etc.  Unfortunately, I have to go home on the 2nd of June as we are short staffed at the store, but John and I will start rotating our schedules for the next 60 days or more that we are here.  Jared will take over as much as he can, as soon as he can, which will be wonderful.  Gaining as much independence as he possibly can.

Therapist came in today at 1030am to do an ASIA score.

ASIA score is the score developed by the American Spinal Injury Association for essential minimal elements of neurologic assessment for all patients with a spinal injury. This is based on scores as assessed by examiner and is popularly called ASIA score.

These minimal elements are strength assessment of ten muscles on each side of the body and pin-prick discrimination assessment at 28 specific sensory locations on each side.

  

 

Getting some chair time!  He made it three hours and blood pressure was great!

Then we had cousins visit! 

Austin and Lauren Grier

Austin (on the left) was discharged in May of this year from Shepherd after he suffered a traumatic brain injury in January.

Saturday, May 23, 2015

First full day at Shepherd Center.  Jared is still in the ICU until they can get his blood pressure controlled.  They are trying to wean him off his IV blood pressure medication so he can be moved to his rehab room.  Hopefully they can accomplish this by Monday so he can start “Boot Camp” on Tuesday.  They got him into his wheelchair today, only for a few minutes, to fit him properly and hopefully we can keep getting him sitting in it tomorrow and Monday.  Because of the holiday weekend, things are quiet around here but I’ve been told that beginning Tuesday, we will start “Rocking and Rolling”.

Within an hour of Jareds admission yesterday, four kids came into his room to say “Hi”.  It was awesome.  All were willing to share their stories, along with their level of injury.  One was hit by a drunk driver, one dove into shallow water, one was doing motocross….all of them smiling, positive and energetic.  Jared is a textbook C6 injury, but with rehabilitation and time, he may progress to a C7 or C8 or even better!  This place is amazing.  Everyone we meet says “You brought your son to the best place”.  We agree.  Our time here will be life changing and very positive!  John’s brother Marty and his wife Karee have been visiting us every day, and can fully appreciate what we are going through as their journey here just ended last month when their son was released from Shepherd after suffering a TBI in January.

I have to go home on the 30th for a week or so, but John will stay.  Our apartment here is simple.  Single bedroom with two twin beds, kitchen/living room and handicapped bathroom.  At least it allows us to be closer to Jared.  It is ours for a month.  Once Jared gets going and his schedule becomes routine we will head home again to give him time to learn his new independence.  There is plenty of support here and we can commute every other week or so.

Well, it’s time to feed Jared his dinner.  The food here is much better that UMass.  Tonight is Tiliapia!

We will update again on Monday.  We are completely exhausted, totally trashed utterly whipped.  I don’t think I’ve been this tired since childbirth…16 days…..where have they gone? Go to bed exhausted….wake exhausted…repeat….repeat…ugh