Richard Kresse’s Life Testimony — Part 2b
My First Days Back at Home
Coming home and getting to see where I grew up most of my teenage years, in the house we built ourselves in Hawkins, was an emotional roller coaster. The number one thing that stood out above all was fear. All I knew was there was very little I could do on my own and I was confined to my “Twin Turbo” powerchair for the duration of each day trying to find ways to overcome depression and preoccupy myself.
I was not able to move back into my childhood bedroom upstairs given we didn’t have a stairlift so while I was in physical therapy in Dallas my Dad closed off and modified part of the living room to make me a little bedroom where they placed my hospital bed and my computer and other medical needs. My Father basically had to adapt and modify the entire house for me to be able to stay with them.
No, Not back to the Hospital!
I had only been home for approximately 3 days and was still just trying to get settled in when an unexpected event occurred further testing my durability. I was sitting in my powerchair and tried to lean forward just a little to try and throw a rag down near a bucket from wiping off and when I tried to throw the rag I lost my balance going forward and started falling face-first into a solid concrete floor. What was worse was since most of my arm was still paralyzed I had no ability to put my hand or arm out in front of me to deaden the blow. All of my weight coming down slammed my head into the concrete floor so hard it made a loud “WHACK!” and within just seconds I was in a huge pool of blood.
The shock and impact on my skull and spine were so incredibly painful I wasn’t even able to breathe to scream or yell but thankfully my Mother was nearby and heard the sound. She began to panic from all the blood where the concrete floor had gashed me above the eye. Luckily after a long and horrible hospital visit, I was sent home with just a concussion and the gash above my eye.
Therapy Continues
After my unexpected ER visit, I began having Homehealth therapists show up at the house a couple of times a week and have me try to do various exercises to hopefully keep building strength and function but I was incredibly limited at what I could do.
The portable bicycle pedals wouldn’t work because my leg muscle function was imbalanced so one therapist would just have me stand next to the kitchen counter as long as I could and then sit down and continue that each week until I was able to stand longer and longer. Mostly with just the muscles of my right leg, but still there was an improvement.
Currently, I could still not even take a single step on my own so we continued the standing exercises until finally, I could stand for several minutes and not need to sit down.
One day when one of my old friends and his girlfriend were visiting I asked the two of them along with my mom if they would get on each side of me and another person trail behind me with a kitchen chair and allow me to try to take steps and walk some for the very first time.
I had built up a noticeable amount of strength in my legs just doing the standing exercises for a few weeks so I felt like I was at a point where I could safely attempt to take a few steps with some assistance.
With my Mom and my friend's help, I managed to walk across part of the kitchen floor and soon enough reported this to the Homehealth therapists where I was able to start small stepping/walking exercises.
I still couldn’t straighten my legs all the way and had to take each step with my knees partially bent and I’m still doing that to this day as only certain muscles in my legs function. It’s more than enough to live with and still defies all odds and medical sciences understanding.
These developments made me incredibly happy and gave me more hope regarding my future, as I was told over and over and over that I would never ever walk again.
Killing Time
While at home in the later part of 2009 I enrolled in a Psychology Degree program with the University of Phoenix to pursue a degree that would allow me to use my “colorful” life and past experiences to try to do some good in the world and help people.
I was struggling with so many “why me or how is this possible?” questions that didn’t make sense so I prayed for every chance I could for God to please help me understand why I survived so many impossible things and to give me the answers for my purpose of being here.
I knew there had to be a reason, something important, because like I said before people just don’t come back from where I have been so I am tremendously blessed beyond all you could imagine.
Well, I finished my first semester of the Psychology degree program and an opportunity came up allowing me to go back for a few months of intense Rehabilitation at Christus Rehabilitation in Tyler, Texas.
This was wonderful news because I was still confined to a powerchair all day every day and the parts of my body that were functioning didn’t come back or start to appear until my last few weeks at Baylor. Which by now was over a year ago in 2009.
More Tough Love at HealthSouth…
My goal to achieve at HealthSouth, or Christus Rehab. was simply to get strong enough to where I could do stairs in my parent's house. That way I could move back upstairs to my old bedroom and not have to deal with my dad's television blaring WW2 movies on the other side of my little bedroom wall.
It was so difficult to work on my college homework in peace with the current living situation and that television. I was pretty pumped to try to change my life for the better and once again try my hardest in therapy.
My treating Physician is an amazing man and a wonderful doctor (you know who you are!)who I was very blessed to be under the care of. He saw the potential to get me walking on my own again and out of that powerchair so he pushed me to push myself and not give up, no matter how tired, or weak, or hurting I was.
Every single day my PT came and got me ready to walk on a treadmill, putting knee braces on me as my right knee likes to give out without any notice due to breaking it in my 2006 accident. I would walk on that treadmill until I couldn’t lift my legs enough to take a step and would begin to trip. Thankfully the Therapist had ahold of my gate belt so would catch me when I would start to fall then we would stop and do the same thing the very next day.
It was so incredibly hard to keep doing that with no day to rest in between. I remember the muscles in my legs burning like fire and feeling so incredibly weak. I told them I didn’t think I could do it because my legs hadn’t had enough time to recover from the first couple of days I set records for myself doing it and they told me don’t worry about falling just walk until I know I can’t walk anymore and if you stumble or fall I’ll catch you.
Thankfully I had a big buff Physical Therapist with some big boulders for biceps so I felt confident in those words. We continued the treadmill and a range of other machines/exercises for 2 months or so and on the last day of being at this facility I walked literally 1.2 miles at 2.2 mph all the way nonstop with no breaks! I’d say that is pretty dang good for a guy not supposed to walk ever again.
My Doctors belief in me helped me achieve the ability to build the strength needed to be able to walk again on my own, the last things I needed were to master balancing myself and to overcome any fear.
While I was doing therapy I managed to make about $450 in my downtime when the Nurses and Staff learned I was a computer nerd and used to service/build PC’s. I was able to use this money to finish out my bedroom upstairs as my old room still needed carpet. My parents bought the materials and began working on my room while I was finishing out therapy.
The last week at Christus or HealthSouth my physician ordered that I stop using my wheelchair to travel down the halls of the facility and begin walking everywhere using the handrails in the hallways until I’m confident enough not to need them. Thank you, HealthSouth/Christus for being such an important part of my recovery!
Starting to Live and Feel Alive Again
Now back at home and able to move back upstairs as I had originally hoped with my most recent therapy stay, I got an opportunity to take a job from home doing computer work. Being that I was a big computer nerd and I had loads of free time I was excited to take the offer and managed to pass the needed certification exams within 3 weeks of starting to learn the work.
I also began starting to go out and do things again, going to the movies with friends, attending church, and even had started learning how to drive again with my mom. We took little short drives to see how I could do and whether my handicaps caused any issues or limitations and it was all going very well.
I had been using a cane after being discharged from Christus but after a few months of walking around with my powerchair gathering dust in a corner, I regained the ability to walk without the need of any assistive devices.
Just Wanting to Breath Normal Again…
Previously back when I was still a patient at Baylor Rehab I got linked up with an amazing ENT that was quite literally a wizard with the blade. Since I had already had my tracheostomy in my throat for 3 years at the time I met him Baylor wanted to have me evaluated to see if it could be removed.
I had already had one failed reconstructive surgery and two other ENT’s literally told me “sorry kid but you're screwed…”. Actually what one of them said was far worse than that and I’m not going to repeat the horrible thing that ENT told me about my condition.
This new ENT, on the first day I met him, after scoping my airway told me he gave me a 50% chance he could fix my airway to where I no longer needed a trach to be able to breathe.
I was ecstatic at that kind of odds as these 2 other ENT’s were known as some of the best all-around and they wouldn’t touch me. During the time since coming home, my Mother drove me 2 hours to Dallas, TX, and 2 hours back a countless number of times for the initial reconstructive surgery and several surgeries to make adjustments.
In the reconstructive surgery, the doctor grafted cartilage from my rib cage into the part of my airway with the stenosis and used something called a Montgomery “T” tube to hold the freshly grafted tissue open so I could breathe. Over time it would harden as scar tissue so that when the “T” tube was removed it would leave me with a sustainable airway. This process took two years to complete.
There was one incident that interrupted my progress during that time that caused me to have to be retrached temporarily. The surgeon warned my mother to keep a new tracheostomy tube and a pair of pliers with her at all times in the event the “T” tube gets totally clogged. If that were to happen I would be completely unable to breathe, and it did.
I have horrible allergies to pollen and really most things green and where do I live, in a heavily wooded area. Well, drainage caused by my allergies built up into a “plug” in my airway, and one day while sitting at the computer that “plug” came unlodged from my upper airway and blocked off the “T” tube cutting off 100% of my Oxygen.
I quickly kept trying to cough and heave but it wouldn’t come out and by this time I’m starting to panic because I can’t get any air. So I started banging on the computer desk as hard as I could and my Mom stepped around the corner to see what was going on. Since I couldn’t breathe I couldn’t speak and all I could think to do was a jerking motion with my hand to get my Mom to pull out the Montgomery “T” tube.
I stood up and set down on the side of my bed while my Mom ran off to grab a pair of pliers and she made it back just as I was about to blackout from lack of Oxygen. As soon as she pulled the “T” tube through the little hole in my throat, which was painful, I was able to take a deep breath of air to keep from blacking out. While trying to keep breathing and catch my breath, all of a sudden the soft tissue from my recent surgery collapsed and I was back to unable to get any air.
I’m incredibly thankful for my mother's quick thinking as she ran off to get a trach tube to put in my throat. I was leaning forward on the side of the bed and I could blow air and blood out but as soon as I started to inhale the soft tissue closed shut. About to blackout again as my vision was getting dark my Mom grabbed my shoulder and set me up straight then Wham! Now that's how you put a tracheostomy tube in! I know a Respiratory Therapist would be very disappointed with that but I could breathe now and time was not on our side. It never felt so wonderful to be able to breathe after an episode like that.
Two weeks had to go by for inflammation to go down in my airway before my ENT could insert a new “T” tube in my airway and continue the process of waiting for the tissue to scar and harden. Thankfully this time we received the paperwork for the Montgomery “T” tube that contained the instructions to properly suction that kind of respiratory device.
We had only been suctioning the lower portion of the tube because we couldn’t figure out how to make it go up as we were never instructed. It was as simple as pushing the outer port down about 45 degrees and that will allow the suction catheter to go upward and get out any drainage and why the “plug” developed in me. Had my mom not been nearby to hear the banging on the desk I would have died.
Well, despite that small setback and after some testing guided by the doctor, sleeping and going days with my tube capped, he finally removed it and bandaged my throat for it to heal shut. The feeling of being able to breathe normally was quite glorious after 6 years with a trach and 2 years of a lot of Surgeries/trips.
Ready to Move on
At this point in my recovery, it had been 2 years since breaking my neck in that high-speed crash. I had been through rehab multiple times now but no matter what or how hard I tried I never regained any movement in my left arm. I could twitch my index finger on demand but the rest of the entire arm was flaccid. That fact made me often think about my desperate prayer to God for the use of one arm while I was a patient at Baylor Rehab.
I finally elected to have my arm amputated due to the horrific pain caused by the dead weight of my arm just hanging there and swinging when I walked. The constant pulling of my arm and shoulder tore it totally out of the socket.
I felt like 2 years was enough time to wait plus I couldn’t take much more of the pain. I elected to have my left arm amputated and the residual limb above the elbow fused to my shoulder to facilitate a mounting point for a robotic prosthesis.
What do you mean by “Permanently Broken Now?!?”
Upon waking up in recovery after a 6+ hour shoulder fusion and left arm amputation, something was obviously very wrong with me the more I awoke. I felt as if I had a boulder in my throat blocking my airway and it was extremely difficult to keep moving enough air through my recently repaired airway; one that took two years to succeed.
Prior to going into surgery that morning, I repeated the exact intubation instructions my ENT surgeon gave me and my mother and we made sure we told every staff member we saw exactly how they needed to secure my airway without damaging the years of reconstruction I’d only gotten to enjoy for a month.
Apparently, at Parkland Hospital in Dallas, TX where my doctor was in the network, the anesthesiologists decided to ignore my ENT’s very specific instructions and chose to use their own device which while in surgery created an enormous knot of tissue directly below my vocal cords. After being moved out of recovery within an hour of waking up I began to get frantic begging and pleading for the nurse to get my doctor because something was very wrong.
She walked into my room and took one look at me laboring so hard to breathe and called for an ENT on the floor stat and he wasn’t in my room for 15 seconds before calling out to prep for emergency airway surgery to have a Tracheostomy tube put back in my neck.
The next part was the worst. As their rushing me back to the Operating Room because my airway was closing shut, I was begging and pleading to be put back to sleep. As I first learned that day they can’t put you right back out with anesthesia right after you come out of it because the risks of death are too great so they tried to comfort my erratic crying and gasping for air by saying they were injecting a drug that would make me forget what was about to happen….but it didn’t.
I can still feel the feeling of them literally having to saw through 6 years of scar tissue that had grown totally closed after the Trach was removed. I’m no sissy man either I have a pretty high pain tolerance with as many injuries I’ve sustained but that sawing motion back and forth through thick scars, while I was awake, will never leave me for as long as I live.
The look on my ENT’s face was heartbreaking when I showed up 2 weeks later. After looking at the damage closely he tried his best to explain why, but that was the only shot he had to fix me because of how the tissue in an airway behaves with being cut on or crushed from high-speed impact such as mine had been.
I later found out 9 months after the incident but 3 months too late due to a “Notice of intent to sue” that all state-funded hospitals in Texas have, the I had a guaranteed win case for the $100,000 cap due to the negligence of those personal/doctors that permanently caused me to require a tracheostomy for the rest of my life. I’ve just never been the kind of person that tries to sue everyone, and that's why I missed the 6-month deadline. All in all, I’m just incredibly thankful they were able to get me breathing easily again.
Houston, we Have a Problem…
Everything was going really well, I loved my new job, I enjoyed the work and the challenges and especially the interaction with colleagues and clients. I definitely enjoyed having extra money during that time but of course, I don’t know who wouldn’t?
Then one day after I woke up and had gotten clocked in to get started on work, all of a sudden I felt the whole right side of my face go completely numb. This was kind of alarming but the profound numbness didn’t go away any time soon so I proceeded to ignore it and go on with my day. Not too many days later the numbness in the right side of my face spread to being the entire right side of my body. I just knew that wasn’t a good sign.
I went two weeks just hoping and praying that the numbness would go away on its own before finally, I made an appointment with a Physician.
After I met this Doctor during my long Rehab stay in Tyler I established him as my pain management Physician due to the fact he’s very knowledgeable about my specific kinds of injuries not to mention being the most amazing doctor I ever met.
He saw me for an office visit and talked it over with me as well as tested my sensation over various parts of my body and then he told me this “I think I know for sure what you're dealing with, but I don’t want to tell you about it unless I’m 100% sure that's what it is”. I thought to myself, that is definitely not a good sign…
His office scheduled me a Myelogram to look at my spinal cord to try to determine what was going on with me.
Breaking Bad….News, That is….
Once I had completed the imaging, we were expecting a phone call from my Physician that scheduled the Myelogram to discuss the results. We were surprised however when we received a call to inform us of an appointment with a local Neurosurgeon instead.
We knew it must have been important for them to schedule an appointment with a surgeon right away so we made sure we showed up to that appointment.
When the Doctor/Surgeon came into the appointment room with us, he immediately filled the entire room with a feeling of total gloom and doom that radiated off of him by his body/facial expressions and total lack of the cheery introduction you usually get when meeting a new doctor. He looked almost as if he was prepared to tell me I was about to die…
He looked at me and my mother with no real expression on his face at all and told us that I have a condition, a spinal cord disease called Syringomyelia. Then immediately afterward said, “there are no cures or treatment options for this disease and almost always when we have to operate on these conditions it's only if the condition is causing the patient life-threatening problems and they always usually turn out worse off than before we cut on them.”
Then he paused for a second and looking very intently at me he said, “you have the worst case of this disease that I have ever seen and honestly I don’t feel qualified as a Surgeon to operate on the severity of your condition and I truthfully won’t touch you with a 10ft pole, even if you begged me or said it’s okay…”
He went on to explain the disease in more detail and that it was caused by the trauma to my spinal cord when I broke my neck. Saying that my imaging showed hundreds and hundreds of round “grape-like” cysts inside of my spinal cord. Which were growing in size rapidly due to blockage of my spinal fluid circulation within my spinal cord. So as those cysts expand and grow larger they were breaking my nervous system connections within my spinal cord. This blockage was also pushing spinal fluid back in towards my brain stem which is why the numbness on my face was the first sign I received there was a problem.
He finished up the meeting by saying with the severity of my disease he was already sure that no other Surgeon in Tyler, TX would take my case and there was a Neuro/Brain Surgeon in Dallas, TX two hours away that people came from the far ends of the country to see and that is where I ended up being referred.
We walked out of that appointment and my mother was crying on the way to the car, she told me “you’ve just already been through so much already and it is a miracle that you can walk again and now this…
My condition was progressing so rapidly that before I even got to see God’s stand-in Surgeon I had already regressed back to almost completely paralyzed all over again after working so hard to get what I had back. I lost almost all of my muscle function except for slight movement in my arm and just enough strength in my legs to only barely transfer from a wheelchair to a vehicle needing full assistance.
My bladder also quit releasing and I lost the ability to urinate without a catheter and all the muscles in my chest and trunk area were stuck in a 24/7 constant spasm that wouldn’t let up making it where they had to put me on two of the strongest muscle relaxers the law would allow. I was reduced to such a shallow labored breathe that it was incredibly difficult to even whisper to my family.
All of this took place from the time I got the first diagnosis to the point I got to my very first appointment with the other Surgeon which was only 3 months' time.
Somehow as I was walking and trying to comfort my mom while she cried, I had a really comforting feeling in my heart, despite what I was just told, that everything was going to be just fine. So many great miracles already occurring in my life I felt sure the Lord isn’t done with me yet. Right as about the time I couldn’t get that much lower in my life all over again, the magic started to happen…
Continued on Part 2c...
