"If you're going through Hell, keep going."
-Winston Churchill

Nov 15, 2011

Where in the world was Katy Blake?

Wow, I don't know where to begin. I suppose I should start with an apology. I never intended to go this long with a lack of updates. But for those who know me, or follow my Facebook page, know I have been quite the busy bee these last few months. It all started on Wednesday, September 7. My mother woke me up with the phone call she received from Methodist Rehab in Jackson, MS, when they asked her, “Were you aware that Katy was supposed to be checking in today?” We were flabbergasted. No one had informed us that Medicaid approved for two weeks at MRC. We quickly rescheduled for me to begin my two week stay Monday, September 12. I was mentally prepared to push my body to the max because I knew the next 14 days would fly by before my eyes; so I hit the ground rolling. On that first Thursday, I stood up for the first time in nine months with the aid of a standing frame. I only lasted 20 minutes, which was a personal best at that point.From then on out, my goal was to do it longer than each time I had before. By the end of my stay, I exceeded even my own expectations by standing for over two hours. I also experienced many other triumphs during my rehabilitation, the biggest being the length of time I was able to stay. It originally started as two weeks, which was then increased to four weeks on behalf of Mississippi Medicaid due to the amount of progress I was making. I was extremely blessed that vocational rehab also granted an extra two weeks so that my combined stay was just a few days shy of six weeks. In those six weeks, I worked diligently on assisted transfers, building upper body strength, regaining trunk control, standing in the standing frame, rolling from side to side, unsupported sitting, correcting poor posture, “walking” on my hands, upper body dressing, and painting. Now you can see how those six weeks went by so quickly! Therapy was absolutely amazing. I enjoyed pushing myself harder and harder every day to try and gain more strength. But that was just the first mile of a very long marathon.
         One other truly wonderful thing that came as a result to me being Methodist was finally getting my power chair modifications. I was fortunate enough to have the best vocational rehab counselor, Tara, while in Jackson. Because of her, I got my chair modified and the two extra weeks of rehab. My original back to the wheelchair was modified to fit me more snugly to help me sit up straight and correct my poor posture. Under my calves are calf pads so my legs no longer hit the bar under my cushion, preventing potential pressure sores. I have a new foot rest that keeps my feet in place whereas before, my feet would fly off with every spasm. My chair has been lowered 2 inches so now I can actually sit under a table for dinner; previously, I had to have a tray in my lap which was somewhat embarrassing when going out to eat. The back of my head rest has been sawed off -it had a sharp metal bar that extended about 5 inches which led to me ripping the fabric in my van. They put in a reclining back and elevated foot plates so that I am able to catheterize in my wheelchair which in is by far the best modification they made. Now I no longer feel rushed with a timetable (every 4-6 hours) to have to get back in the bed to catheterize. The “new and improved” power chair has given me more freedom and confidence than I had before.
So this leads me to present day. I have begun the process of sending in all my records and paperwork to the Shepherd Center in Atlanta. As of right now, they are on a waiting list until late January. If I leave for more than 30 days, I will have to go through the process and paperwork of being discharged from Mississippi Department of Rehabilitation. So I will only be going to the Shepherd Center in 30 day increments. The tricky part now is figuring out when I will go. In March 2012, I will have to be present at Ole Miss to be the recipient for the Sigma Nu Charity Bowl fundraiser. In addition to being unable to go during the month of March, I am also looking into getting a bladder auto augmentation. As of right now, I have to use an intermittent catheter every 4 to 6 hours to empty my bladder. I am unable to do it myself and it also limits me to a schedule where I have to be near a restroom, properly dressed, and have assistance to do this within the proper timeframe or I could experience autonomic dysreflexia. With this surgery, my bladder would be stretched so that I could go longer periods of time between catheterizations. They would reroute my appendix to create a stoma on my stomach so I would be able to catheterize through there. So the benefits are definitely worth it: to go longer between catheterizing; to be able to do it virtually anywhere and in any outfit; and to one day be able to do it myself. This procedure will increase my independence greatly.  There are, however, a few cons and that would mainly be the recovery. I would be in the hospital for about a week, if not more. Typically, most patients are not allowed to intake fluid or food up to two weeks afterwards. All the nutrients will come from an IV. The surgery cuts into major organs- the bladder; appendix; intestines- and can prove to be quite painful. I would have to use a Foley catheter for a few weeks afterwards and then slowly and gradually begin to intermittent catheterize my stoma, to let it fill up and stretch out. My surgery would have to be done in Jackson, MS, and would require many, frequent checkups afterwards. It is generally a 2-3 month recovery. I was told by my urologist that it is not IF I need this surgery, but WHEN. 
So my thought process is to have this done before I pursue going to the Shepherd Center. I would prefer to have the surgery out-of-the-way as opposed to going to Shepherd for one month,  building up strength and then losing it all while recovering. It would also make traveling and staying places (such as Ole Miss and Atlanta) much easier. So it looks as though I will have to practice patience, something I lack, as far as going to the Shepherd Center. I am just so unbelievably ready to get there. April seems like it is ages away! But as fast as this previous year has gone by, I'm sure the next 5 1/2 months will go just as quickly. Other exciting news is that I finally have my personal care attendant. I met a wonderful woman who will help me do daily activities such as bathing, grooming, exercising, etc. This is a great opportunity, not only for me, but also to give my mother a break from being my primary caregiver 24/7 for the last 17 months. 
In other nonrelated therapy and progress news, I have really been enjoying painting and doing other arts and crafts. Right now I am working on overdue works of art that I’ve promised people and Christmas gifts. My goal is to next year work on projects throughout the months so that in October I can set up a booth at Zonta (an arts and craft festival in my hometown) to help raise more money for additional rehab, medical equipment, modifications, etc. As far as medical equipment goes, I am finally getting a fully electric hospital bed this week. In the bed that I am in at the moment, I am unable to practice transferring myself. In addition, I had a dear friend of mine gave me her standing frame. It is a top-of-the-line piece of equipment and I am beyond blessed to have it. I will have to put forth some of my own money to modify it to fit me, but it will be undoubtedly worth it in the end. I was also fortunate to be given a new manual chair that weighs around 30 pounds less than my current manual chair. It is my goal to practice pushing myself is much as possible to build up strength, endurance, and to one day not need my power chair. And finally, another BIG thing I will be looking into soon is driving. A van could easily be modified so that I would be able to drive my power chair into the driver seat and use hand controls. Once I am able to catheterize myself and drive myself, I can finally get back in the college. Lots of exciting things going on, sometimes it is even hard for me to keep up! Will definitely update more soon. God bless!

1 comment:

  1. Glad to read your update. I hope you continue to see better days and improvement beyond your expectations. Please keep us posted! I hope to be well enough to attend Zonta next year and I look forward to seeing you there. :)

    Kelli Bosarge