Round Two – Wed. July 29th

Another blog post by Jared. For this one I’m pretty much just going to talk at this microphone and say whatever comes to my mind. Starting Monday I begin another two weeks of being alone in my room, that is alone from my parents. My stay here has been quite lengthy and there are patients flowing in and out at what seems almost weekly. Recently an18-year-old moved onto the floor along with the first adolescent girl since I’ve been here. I’ve made a point now to try and meet all the new younger patients and talk to them about their injury and how to cope. When I first got here I talked with other patients who had been here for a while, it helped me to just talk with another person in the same shoes, and so I figure I should now repay the favor. Everyone’s injury is different and the two new patients are actually paraplegic but in the end we’re all dealing with similar struggles and could all use a helping hand.

With only about three weeks left I’m getting anxious to be home. It has really been almost 5 months since I’ve been home as I was only home for less than 12 hours before my injury. I can’t wait to see my house, my dogs, my family, and my friends again. However I’m a bit afraid of how I will react with the new perspective of being in a chair. I’ve heard from people here that the two hardest times dealing with your injury are the initial few weeks and when you ultimately return home. I know there will be a lot to adapt to but just as I’ve persevered here at the Shepherd Center I hope to do the same at home. The plan right now is to go home for a week and return to the Shepherd Center on the 30th of August for two weeks of day program and then return home again for two more weeks. I’ll repeat the same sequence come the beginning of October as the research study calls for me to be back at the center September and October 1st. After that I’ll be home for good only returning in November, February, and June for more research checkups. I hope to learn a lot about what I can’t do while I’m home and improve on those things during the day program.

As far as my progress goes I started doing my own bowel program, I continue to do all of my own ICs, and use the Hoyer lift much less often. Slide board transfers have become much more frequent and I have begun working on depression transfers as well . I have also started practicing putting on my shorts but it’s still a constant battle; in time I know I will get the hang of it. All of the different skills I have to learn are centered around my strength, endurance, and balance. Each day I improve on all three but I still have much to go. Recently it seems as though my body is caught up to me and I wake up much more sore and tired each morning, but for me this is a good sign, it means I’m actually working out, gaining strength, and progressing in the right direction. Hopefully with being home I will be able to rest a bit before returning again, but ultimately the therapy will never end and I will continue to improve well after I leave the Shepherd Center for good.

I should have my own copy of Dragon software soon so these posts will become even more frequent but at the moment I’m still writing in the assistive technologies lab. I hate to think that all of you wait anxiously each day to see a new post. Hopefully this one will feed your desire to know more about my progress. However, if any of you feel so inclined, you can always contact me on my cell phone for Facebook and check in with me. You may think that I’m bombarded with messages each day but in reality my inboxes remain quite dormant. Although that might change after this.

Like I said before I can thank everyone enough for all they’ve done and all the effort that people put forward to help me. Thank you.

Friday, July 17, 2015 –

John and I came back to Atlanta last Friday and have been on fast forward since we hit the ground.  When we walked into the hospital, it was like returning home.  Lots of hugs, smiles and “welcome back!”.  They are really wonderful here and we are so blessed.

Right behind us on Friday, three of Jared’s brothers from the fraternity arrived to spend five days with him.  It was awesome to have them with us and gave Jared a big boost.  We taught them as much as we could about Jared’s injury and what his needs will be going forward.  They were receptive and we rolled around Atlanta and had a great time!

The boys of Lambda Chi Alpha!
The boys of Lambda Chi Alpha!

Jared is now in the manual chair full time, which will help his independence greatly, but also tests his physical limits and his stamina, which at the moment is pretty low.  Pushing yourself around all day, every day is very physical, and he doesn’t have use of his hands, so he pushes with his palms.  He has special gloves to help with grip so he has better traction while pushing.  He has very weak triceps which we are hoping that over time he can build up.  We went to our second and final seating clinic yesterday and ordered Jared’s permanent chair.  Hopefully it should be here in about 4 weeks, just before discharge.  Jared chose some nice colors and options, like Smart Drive technology which is like a rocket boost for the chair.  It basically makes his manual chair into a power chair to help him get up and down hills better.  Its made of titanium and carbon fiber, so its super light and should be kinder to his shoulders.  Of course, insurance may not cover all these options, but we will see.

I got checked off on all the stuff needed for a day pass, so I can take Jared out of Shepherd if John is not here.  This includes doing all of his daily routine by myself.  Bowel program, IC (catheterizations), bathing, getting him in and out of bed using the hoyer lift, how to operate the wheelchair and traffic safety, weight shifts, clothing management, autonomic dysreflexia and hypo/hypertension.  When we return in two weeks, we will work on wheelchair to car transfers and managing the airport.

The weekend was very busy and we tried to leave Jared alone with his friends so we took the opportunity to attend Atlanta Foodfest with Johns brother Marty and his sister Cathy, a trade show for work, and an old friend from CT visited and took me out for a few hours.  Some friends of friends also brought Jared a milkshake which was awesome with these 95+ degree days in Atlanta!

Jared got to go into the pool for the first time on Wednesday.  The pool was 90 degrees.  Jared spent 45 minutes in it and he came out full on shivering.  The temperature regulation thing with spinal cord injury patients is horrible.  It should be an interesting Winter this year.  He had mixed emotions about the pool.  Because he can’t feel anything below his nipple line, he couldn’t really notice the difference in his surroundings, whether in or out of the pool.  He will be getting in the pool every Thursday now, so hopefully he will see the benefit the next time.

In the pool!
In the pool!

Jared finally got approved for social security and I have been working on getting him a PCA (personal care assistant).  He will need someone when he returns to school in Worcester, MA, and at home, to help him with his morning bowel program, showering and dressing.  I have advertised in all the local nursing colleges and we have already gotten some good responses.  We are hoping Jared can return to school in January 2016, if all the stars align correctly.  Many many people are involved in this coordinated effort and I hope we can pull it off for Jared if he is ready.  So many emails, paperwork, phone calls.  Never ending, but it’s all worth it if he can have some normalcy.  “New normalcy” that is….

He also got to speak with Chad Hymas on the phone.  Chad is a C5 quadriplegic who is now a motivational speaker, and holds the world record quadriplegic marathon of 513 miles.  He shared some personal insight with Jared about his life and how he deals with things.  He was realistic about life outside of the hospital and how things will and can be done differently.

So onto next weeks schedule…..

This weeks schedule
This weeks schedule

Monday seems a little slack as we don’t start till 11 so Jared can have an easy morning, but as you can see, things move quickly around here and there is a lot to do.  By dinner time, Jared is usually pretty tired.  On Fridays they usually get out of Shepherd on group outings for some fun.  He also has therapy on Saturdays for an hour or so.

Next week Jared will be cathing himself and learning how to do his own bowel program.  These are two critical things to his independence and dignity.  Any SCI patient will tell you these are the worst parts of the whole injury.  Hopefully, in time, Jared will be able to master these on his own.  As he puts it “How would you like a stranger to put their finger up your butt”.  Its just horrible but no way around it so swallow hard and move on……

Currently, he is cathing every 6 hrs during the day and 4 hrs at night.  Yes, he gets woken every few hours every night to be turned and cathed, so he never really gets an uninterrupted night of sleep.  However, he has managed to sleep through a couple of 2 am caths! (I don’t know how :-).  This pattern will probably stay with him as a permanent routine, and he will have to wake up every night and do it himself.

John is leaving Monday morning to head back to work in Savannah and I am headed home on Wednesday.  We will both be back the 7th of August or thereabouts, and we leave Shepherd together, all of us!!, on August 20!!!  Hooray !

Post by Jared, Tue July 7th

The first blog post by Jared. Posting with Sue’s account for ease of access. Starting July 16, a Tuesday, my parents left me to go home and handle many things at the house to prepare for my return home. For the next nine days I was alone in my room with only the therapists and nurses to assist me. In that time I was able to learn how to do much of the things that I originally needed some assistance with on my own. At the same time being alone also helped me with learning how to ask for help when I needed it. Many things like eating have become easy for me, I only require some help initially setting up to eat. Before my parents left they helped set up my computer to the point where I was able to use it on my own with the help of some devices provided by the assistive technology. Today I am using a software called Dragon naturally speaking to write this post and get acclimated to the software. In the future I’ll be able to use the software to easily control my computer and write papers.

                On another note my therapy is going very well, I am using the manual chair full-time now and have been out of the power chair for over a week. My strength and balance are increasing as well as my endurance while I’m using the manual chair. I have been doing my transfers with a slide board rather than the hoyer lift more often and plan to begin doing depression transfers in the near future. I will begin doing my own ICs and bowel program soon but that will take much time and practice. I am nearing the halfway point to my release date and I’m becoming very excited to get home. I am seeing new improvements and motor function and senses each week. With the last post I’m sure many of you have heard of my advances. In therapy now we are using E stimulation to attempt to gain even more movement back and my thumb and hands. Every little bit gives me hope that I’ll be able to one day regain much of my motor function, if not just the use of my hands.

                I hope to be able to continue making more posts more often. I can only use the Dragon software while in the assistive technology office but I may attempt to get my own software to use in my room. Either way I will make an effort to continue to post my own updates and add to the blog on my own. What was once an account of my journey in the beginning will now become my personal account of my own journey for those to read.

Friday, July 3rd, 2015

John returned to Atlanta alone on June 25, after a crazy busy 9 days at home.  Then he came home again on the 30th to get ready to go back to work on July 5th.  I have been home for almost three weeks now, and I will go back down to Atlanta on the 10th and stay the rest of the month, as John will be working in Savannah Georgia, and will hopefully be able to visit on the weekends.  It’s only a four hour drive from Atlanta.  Jared’s apartment is moving along, and we should be finished with all the modifications by the end of July hopefully.  Some modifications will have to wait until Jared is home for a while and we find what works for him and what doesn’t.

On Monday we had our team goal meeting.  I was present by facetime and it was great to see everyone after being gone for so long.  We discussed how great Jared is progressing and what decisions he will have to make in the coming weeks.  Types of wheelchairs, what things he will need adaptive devices to help him with etc.  We are at the halfway point as discharge date is August 20th.  He wants to be in the manual chair more than anything, and he has decided that a power assist chair is the best thing for him.  This will enable him to be more independent, but will save his shoulders and his arms from overwork.  The manual assist chair takes up a lot less room and is easier to maneuver and get into places.  It also will provide him with much needed exercise which will be better for  his overall health.  He also test drove a V6 rough terrain electric chair with off road tires that would enable him to get around the farm easier.  He loved it, but insurance won’t cover a second chair, and the price tag is $22K.  We have put that one on the wish list.  Once he is home we will be able to prioritize things better.

Yesterday we received some news that we are taking cautiously.  Spinal Cord Injury is still not a clear path, and so much more research needs to be done.  Jared thought he had some sensation in his toes about two weeks back, and when he feels something different going on he is supposed to tell his physical or occupational therapists, or in his case, the study managers as well.  They noted the changes, and continued on.  That’s all you can do.  Everything is so subtle, and progress is like a slow drip as you watch it come out of a faucet.  You anticipate something coming, but it takes forever….We want to jump for joy and get excited, but don’t want any false hope.  This is already an overwhelming emotional rollercoaster, and yes he MAY have had feeling, but what does it mean in the end?  It could be a sign (which of course we are ever hopeful), but it can be a double edged sword as well.  If a spinal cord injury patient has increased feeling in an area, it could also lead to more pain.  We don’t want pain.  We want movement and sensation but no pain.  Will this increased sensation bring on more sensation of pain?  We hope not.  Only time will tell.  However, they did an ASIA study again yesterday (yes more poking and pricking) and Jared was UPGRADED from an ASIA A to an ASIA B, or from a complete C6 quadriplegic to an Incomplete C6 quadriplegic.  This means they found he has increased sensation in some of his toes and his anus.  Yes this is fabulous news (brought me to tears), but cautiously optomistic.  What does it mean?  We don’t exactly know yet.  Nothing really at the moment, but we are waiting on seeing the doctors next week and discussing the entire thing.  Every bit of progress is good as long as it doesn’t create long term pain for Jared.  Chronic pain in quadriplegics is prevalent, and so is drug dependence etc.  So far, Jared doesn’t have much pain, except muscle pain after working his shoulders hard.

At the same time, Jared has been having a different issue that they can’t figure out.  His right leg is swelling a lot.  From his hip down to his ankle.  They’ve done a couple of ultrasounds and have found no blood clots, but the swelling remains.  The doctors have said he could be making bone, which happens in spinal cord injury patients.  We don’t know what this means for the long term, but they are monitoring it closely.  Just another side affect of quadriplegia.   Yuck……..

We are sorry we couldn’t be spending July 4th with Jared on the 7th floor watching the fireworks through the big glass windows, but he is with his Mom, who is down there for a week, and I’m sure they will have a great time!  It sounds like the month of August will be busy with visitors as well!