Home again…Home again….Jiggety jig :-)

Wooooosh.  We arrived home one week ago, and now we are packing to head back for two weeks of therapy.    The last days at Shepherd were surreal.  We met so many fabulous people and learned volumes which hopefully we can pass on throughout our journey into this next phase.  Trying to tie up loose ends, saying goodbye to so many people.  Patients which we might never see again, but have shared such a life changing event with that we will never forget them.  Hopefully, in this time of social media, texting and emails we will find a way to drop a line and check in to see everyone’s progress.  Peer support is what gets everyone through this.  We rely on each other so much.  During those last days we made sure to make it to the newer patients to show them that it will get better, and life is not over.  It takes time, as Jared will gladly tell you.  A lot of time…….There will be soooooo much frustration, exhaustion, tears….SCI doesn’t just affect patients, it affects families.

This week was working on Jared’s new routine, meeting his new team of doctors, seeing old friends, and trying to relax……just a little…..Friday we met our FABULOUS new Urologist, Tuesday our new PCP and today, our new FABULOUS physiatrist.  We are very happy we have a great team of doctors!  Jared is looking forward to starting rehab locally at the Hospital for Special Care in New Britain once we return from Shepherd.  Three times a week for 2-3 hours a day.  25 miles from our house…one way.  How exactly we will fit this into our schedule is a whole other story…..

Jared’s friends have not stopped visiting and it has been really great to see everyone.  John and I have been busy working on the house modifications, insurance, Medicaid, grants, loans, driving assessments for Jared, car shopping etc. and I have managed to get into work a few days too.  Jared’s bed is too soft, his shower chair is too hard and the carpet in the apartment is hard to roll on with his wheelchair.  Adjustments…..its all about adjustments.

Adjusting to life at home has not been easy.  Unfortunately, Jared got another urinary tract infection and he’s been reflexing a lot at night, so he has to wear a condom catheter.  This means he cannot cath himself because the condom catheter is difficult to remove and replace.  So, John has not been sleeping much.   We try to get Jared into bed at 10pm, then he caths at 2am and again at 6am.  John is the most amazing father I have ever witnessed.  He cares for Jared like no other.  I am perfectly willing to rotate the nightly shift, but John and Jared are father and son, and have a good routine going.  They are alike in personality and idiosyncrasies, and it just works better.  This too shall pass, and each day will get better, and Jared will get stronger and require much less intervention on our part.  In SCI, the first year is the worst.  The body is still in shock and things don’t regulate until after a year.  We have to be patient and keep our eye on the goal.

Jared has done very well with his transfers into our Honda Element.  He requires minimal assistance and his wheelchair fits perfectly in the back, and we still have room for all four of us in the car.  Why Honda stopped making that car, I will never understand.  I know it was economics, but if they had just marketed it differently.  We are looking into buying Jared a converted Element as well.  There is a company out in Michigan that converts Elements and they are pretty cool.  Wheelchair ramp and seating for two besides the driver.  I think Jared has come to the realization that it will be easier for him in the long run if he has a car with a ramp.  His shoulders are precious now, and some things just aren’t worth the effort.  Doing transfers takes a huge amount of effort.  Someday I will start making videos of Jared’s daily journey so everyone can see what I see.

Yesterday we visited WPI, where Jared goes to school.  The fraternity had banners up with the “GrierStrong” logo, which was pretty amazing.  We are truly blessed to have such a great group of guys supporting Jared.  We also had a meeting with the Office of Disabilities, Residential Services, Department of Health Services, Academic Advising and Financial Services.  It’s early yet, but we want to know what we can expect when Jared returns to school.  There will be a lot of planning but we are still aiming for the goal.  They have had students like Jared who had a full time care person living with them in the dorm to be available for emergencies as well as daily care.  Nice idea, just not monetarily a realistic thing for us right now.  However, who knows, we will continue to keep our eye on the goal…..

It has taken me three days to write this post…..yesterday I chilled on the tractor for two hours brush hogging.  It’s amazing how good that feels 🙂  John weed wacked for two hours as well.  He will be buried with that thing…

Talk soon….on our way to Atlanta….

August 15 – 5 days to discharge!

Jared has had a rough time lately.  Bowel problems galore, which has unfortunately hindered his therapy.  He was not able to go into the pool again.  He had a spinal tap last Tuesday for the study which resulted in a severe debilitating headache which lasted five days.  He was unable to get out of bed or sit up in bed.  Two steps forward and five steps back.  He lost 10 lbs.  John and I arrived on Wednesday and it was his first full day out of bed.  He is back in therapy now and looking forward to discharge, so once again back on the fast track!

He is progressing with his bowel and bladder which is important for his independence.  He is able to cath himself without any assistance now and is progressing with his bowel with minimal assistance.  His transfers are getting better and he is not using the hoyer lift at all.  He transfers from his bed to the shower chair in the morning.  It is dubbed “bare bottom” transfer and as his therapist said is one of the more difficult transfers to master.  He does it with minimal assistance.  Transfers require much physical strength.  Patients have to put a board underneath their bottom and “slide” themselves from bed to chair or from chair to car etc.  This is the first step until they gain strength to do a “depression” transfer which means they use their arms to lift their bottoms from one point to another without using a slide board.  Jared cannot grip anything, so “grabbing” to hold onto things to assist himself is nearly impossible.  He uses assistive devices that the therapists actually construct for specific things that he needs help with, i.e. toothbrush holder, hairbrush holder etc.  Everyone is different, and each SCI is different, so assistive devices must always be tweaked to each patient.  It’s a constant learning curve, and as Jared gains ability, the adaptive devices must undergo changes as well.  Good thing John is handy with a screwdriver!  Jared has a mind like his father, and his ability to problem solve is amazing.  All the staff at Shepherd know this first hand! He is determined to fix everything.

This whole experience has enlightened me even more to the huge healthcare crisis in our country.  I have always stayed far away from politics, but everyday I am reminded that our system is broken and it’s very frustrating.  I am very appreciative that we have insurance through John’s employer, but the reality of what they cover AFTER a catastrophic injury is mind blowing at best.  Upon return to home,  Jared will need an adjustable bed, preferably full size, so he can turn himself at night and have room enough to move around the bed to get himself out.  He is 6’2 so he needs a longer bed. He will need a shower chair so that he can do the bowel program by himself and take a shower by himself.  Two things, which to me, seem pretty important in order for him to continue his strive for independence.  We were notified by our durable medical equipment vendor that the bed would cost $3500 of which insurance covered $900 and the shower chair would cost $2500 of which insurance would cover NOTHING.  Apparently insurance companies, and Medicare, consider anything related to the bathroom, a luxury item and nothing for the bathroom is covered.  How is Jared supposed to shower and go to the bathroom?  Apparently, insurance companies feel that Jared should be bathed in bed and do his bowel program in bed.  I am still stupefied by whoever deemed this as policy.  I wonder if they have ever been exposed to a quadriplegic?  Hmmm…..I’m now in search of someone who works in insurance to explain this to me.  In the end if they paid for Jared’s shower chair, I would think it would cost less because I wouldn’t have to use half the supplies that insurance covers.  I.E., chuck pads etc., and Jared would be INDEPENDENT, and able to function on his own without assistance.  If he has to do everything in bed, he will need someone to do it for him and if he lived with us, we could do it, but if he lived independently, he would have to hire someone.  It’s still all new and confusing, and this is now my all consuming task.  How can we make Jared independent without putting ourselves in a position of blowing through our savings and having to work until we are 80 to support him?  Many people have told us to put Jared on Medicaid because they cover more and have teams of people to help with claims if they are rejected.  This totally goes out of my moral comfort zone.  If this is a harsh reality then it will take time for us to get to that level.  John and I work hard and have good insurance, and John’s company pays a lot for this good insurance, why can’t they just cover a damn shower chair?  In my quest to always find ways around things, I did some research and found a company called NEAT in Hartford that gets durable medical equipment donated and refurbishes it then sells it.  John and I went down and found an 18″ self propelled shower chair for $150.  Hopefully this will work.  If not, it’s completely returnable and we will try another route.

We have to fight the insurance company on the wheelchair as well.  They will cover an electric chair for Jared, which limits his independence, and does nothing for his overall health, but they won’t cover a power assist.  The power assist will cost $6200 out of pocket for us.  Again, independence is not in the vocabulary of insurance companies.  You can’t transition from a power chair.  It is heavy, bulky and very difficult to maneuver in public places.  You can’t fit underneath a table at a restaurant etc.  You need a special car…The list goes on.  Also, what 19 y/o wants to be in an electric chair if he doesn’t have to be?  Power assist will help Jared go up inclines that he can’t physically push himself up.  It gives a little “boost” of power when he needs it.  A manual chair is so much healthier.  It uses muscles and works the heart and helps his body maintain condition.  If he had to be in an electric wheelchair, none of this would happen, and his body would slowly be ravaged by lack of movement, muscle atrophy etc.

Anyway….enough negative…onto the positive….Jared has a very full and fulfilling life ahead of him!

John and I finally earned our Day Pass!!  This means we can take Jared in a car or on mass transit.  So today we went to the Georgia Aquarium!

Got onto the Marta bus and got off at Olympic Park, had an awesome hot dog at the Eatery and traversed our way through the thousands of people on a Saturday during the Summer at the Aquarium.  Oh my…..crowds just aren’t our thing, but it was a good exercise for Jared.  Being in a chair puts a whole new perspective on people and life.  Jared is 6’2, but in a chair he is about 4ft.  I told him it was no different than being a little person, so suck it up buttercup.  It just proves that so many people have “disabilities” (different abilities) that are invisible, and we should appreciate what we have!  We spent about 2 hrs there until we were on sensory overload, and walked about a mile until we felt like catching the Marta back to Shepherd.  Overall, a great day, and a wonderful taste of freedom for Jared.