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.