Ulcers and Tissue Death

When I came out of my back surgery in November 2015, my parents noticed that I had two puncture wounds on my left ankle.  I didn’t have them before I went in for surgery so we know that I got them while in the operating room.  We’re thinking that either my ankle was bumped or that the O.R. team tried to put an IV there.  We didn’t think much of it and expected them to heal.  But unfortunately they didn’t heal, instead they grew together and eventually became an open sore. 

I found a wound doctor in Layton that I started seeing the beginning of March.  A lot of different things were tried to get this ulcer to heal.  I had many forms of collagen put in, a snap vac that put negative pressure on it to help divide the cells faster, and my blood was drawn and then put into a machine and eventually formed into a clot that was then put on the wound.  All of these attempts didn’t work.  It just seemed to get deeper, which was pretty frustrating.  In May I was put into a walking cast in hopes that it would stabilize my foot and keep my ankle from moving so that the ulcer would have a chance to heal.  My foot was checked a few days after the first cast was put on.  It seemed to be working and I was put back into a cast, this time not having my foot checked for a week.  It was pretty hard walking with the cast because my balance was still off from everything that I had already gone through. 

My parents went to Hawaii for twelve days, a day after I got my second cast, to help my sister, who was having her third child.  Since I had only been home from the hospital for a few weeks my parents felt it would be best if I stayed with my grandparents while they were gone.  My grandma took me to my appointment to get my cast off and check my foot.  I wasn’t prepared for the news that would come.

After the cast was taken off, my grandma looked at my foot and noticed that I had a bruise on the bottom of my foot.  I had her take a picture of it since I really couldn’t see it.  I figured it was just a bruise and that it would eventually go away.  My doctor came in and looked at my foot.  What looked like a bruise wasn’t a bruise.  I was told that somehow the blood flow had stopped in that area and killed the tissue.  The doctor proceeded to cut away the dead tissue and sent it off to have it analyzed.  It didn’t bleed when he started cutting and I couldn’t feel a thing, which surprised my grandma.  I lost the feeling in my foot a year ago after everything started, so not having feeling in my foot has been good and bad.  My doctor told me that when I came back in a couple of days that they would do a test to check the circulation in my foot.  I was then told that I could not walk and needed to be in a wheelchair.  I couldn’t believe this had happened especially while my parents were gone.  Thankfully I still had a wheelchair at my house from the last time I was in it.  We picked it up and then drove back to my grandparents’ house where I called my parents to let them know what had happened. 

A couple of days after my initial doctor’s appointment I went back in to have the test to see how much circulation is in my foot.  I was told that if it was low then I would need to see a vascular surgeon.  During the test, which took ten to fifteen minutes, I just kept hoping and praying that the numbers would be high.  The test came back showing that I only have 20% blood flow in my foot.  That’s really not good, it should be a lot higher.  I was very disappointed and didn’t know what was going to happen.  I didn’t know if my foot would heal with that poor of circulation.  My doctor went and called a vascular surgeon that he knows, explained my situation, and then immediately sent me over to see the vascular surgeon.  I saw the vascular surgeon who did another test on me and then asked me about my medical history.  He couldn’t believe that someone so young had so many health problems.  He set up a CT angiogram for that Friday where the vessels from my heart down would be looked at.  He believed that I had some sort of vasculitis.  I had the angiogram done and it showed that the vessels in my legs are narrow and some have aneurysms in them.

It took a few days, but once I processed everything, I couldn’t believe this had happened to me.  I wasn’t happy and didn’t understand why Heavenly Father was going to make me go through this again.  I was very upset with Heavenly Father and my faith started to waver.  This was the second time I ended up in a wheelchair because of pressure sores since I was 10 years old.  I didn’t want to go through the emotional pain again.  I became very self-conscious about being in a wheelchair when I was ten because of what people said and how they acted around me.  That hasn’t changed.  I dreaded people seeing me in a wheelchair because of my self-consciousness.  I didn’t want to be looked down on or judged.  I didn’t even want family to see me in my new situation because I was scared and felt vulnerable, which is really stupid but it’s how I felt.  The first Sunday I was in a wheelchair it was my stake conference, and since I was able to watch it online I told my grandparents that I wasn’t going to go to church with them.  In reality I could have watched my stake conference and gone to church with my grandparents but I was so scared and didn’t want anybody, including my aunt, uncle, and cousins seeing me.   I know I’m loved by them and it wouldn’t have been a big deal but like I said, I was scared. 

My brother and his family came up to my grandparents’ house for dinner that Sunday night which helped.  My grandma knew that I was feeling down and that having my brother and his family over would help me.  I was nervous about how my nephews would react to seeing me in a wheelchair.  They didn’t care and showed me more love and acceptance then I could ever imagine.  They helped boost my spirit that night. 

Even though I‘m in a wheelchair I still try to be as independent as possible.  Because of past experiences I have a hard time letting people help me.  I don’t want to feel like I’m a burden so I tend to just do things myself, even if it’s difficult for me. 

A week after receiving this devastating news I started hyperbaric treatments.  I was told that I would start out doing twenty treatments to see if it was working, if it was I would continue with the treatments.  During hyperbaric treatments you lay on a gurney and are sealed into a pressurized chamber where you can either sleep or watch movies.  Hyperbaric treatments is where you breathe in oxygen that is three times higher than normal oxygen.  Having more oxygen in the blood helps in wound healing.  I would go to hyperbarics five days a week for about two hours each day. 

A couple of weeks after I started hyperbaric treatments a new sore developed on my fourth toe.  When this new sore was discovered I was pretty upset.  I kept feeling like things were getting worse, not better.  Around the second week in June I had a wound vac put on the sores on my ankle and bottom of my foot.  A wound vac is a machine that you wear 24/7 that is like a vacuum and puts negative pressure on the wounds.  A piece of foam is put over the sores and then taped down with a special kind of tape so there is a good seal.  With so much negative pressure being put on the sores it will suck up the drainage into a canister.  The negative pressure is supposed to help the cells divide faster and help the wound heal.  I had the wound vac on for two months, having the dressing changed twice a week.  When I had the dressing changed I was able to see how much or how little progress the wound had made during the week.  I believe that it did its job and helped the wound on the bottom of my foot get smaller.  I didn’t really notice it doing a whole lot for my ankle sore.

 

In the middle of July as my wound doctor was checking the wound on the bottom of my foot, he noticed that the capsule covering the joint of my pinky toe was exposed and had slipped.  I was sent to see a podiatrist down in Salt Lake.  As I saw this doctor I was told that I needed to have a graft that contained shark cartilage and cow collagen put in the wound.  This procedure would have to be done in the operating room and would have to be done that week.  The doctor told me that if I didn’t have this done then the tendon would die and the death would move into my bone and I would need my toe amputated.  I had the surgery on Friday, July 15, 2016.  It was a very simple surgery and I didn’t have a lot of pain from it.  After a few weeks this graft did what it was supposed to do and covered the open capsule with granulated tissue that would then start to fill in with skin.  This graft helped my ankle sore and the sore on the bottom of my foot make significant progress. The sores started coming to the surface and shrinking.   

Toward the end of August my wound doctor decided that I would benefit from an epidermal graft.  This is where a machine is placed on the thigh, it heats up the skin and forms tiny blisters.  The blisters are then sliced off and put on the sores.  The blisters are supposed to help promote skin growth.  It takes anywhere from two to six weeks to see results from this type of graft.  For me it took about four plus weeks to see significant improvement. 

Finally at the end of September the sore on my ankle healed.  It had been so stubborn for so long I didn’t know if it would actually heal.  I was very excited when I saw that it was healed and saw that the sore on the bottom of my foot only had a small sliver left before it was fully healed.  I was anxious to stop hyperbaric treatments but knew I couldn’t until I was fully healed.  One week later, the beginning of October, the sore on the bottom of my foot was healed.  I was so excited because the doctors weren’t sure if it would heal or not.  I was finally able to stop hyperbaric treatments after having 79 of them. 

Being stuck in a wheelchair and not being able to walk because of the sores has been very hard on me.  There have been many times when the emotional pain has been too much and almost paralyzing.  I have been so scared of what people think when they see me, that I find myself making excuses to avoid certain situations.    I have tried to tell myself that it doesn’t matter what people think of me, all that matters is what Heavenly Father thinks of me and what I think of myself.  Unfortunately I can’t always convince myself of this. 

 When the emotional pain gets to be too much I don’t always feel like I can talk to others about what I’m feeling, so I just hold it in until I am alone.  There have been many nights where I have literally cried myself to sleep because the emotional pain is too much and I can’t keep it in anymore.  During these times I have prayed for strength to make it through another day.  It’s been amazing to see and feel the strength that Heavenly Father has blessed me with to go through another day and then another.  I don’t think I would have been able to make it as far as I have without the help from a loving Heavenly Father. 

My journey is not over yet and I know there are more challenges ahead of me, but with help I will overcome them.  A lot of the fears that I have haven’t subsided and still haunt me on a daily basis.  But I am confident that everything will work out how it is supposed to as long as I keep my faith strong and trust in my Heavenly Father’s plan for me.   

Subarachnoid Hemorrhage

After coming home from the hospital I had to use a walker to help me walk because I didn’t have a lot of balance and the walker helped steady me.  After two weeks of using the walker I decided that I had had enough of it and that I wanted to walk on my own.  I practiced walking without my walker by walking up and down our hallway with my mom right beside me in case I started to fall.  I was able to do this and would also practice with my therapist.  Soon I was able to walk without the walker although I still had to hold on to the walls, table, counter, chairs, couch, doorknobs, and anything that was stable.  I wasn’t strong enough to walk without holding onto anything.  Even though I still had to hold on to things I felt like I was making progress. 

During the month of December the feeling in my right leg started coming back.  It had been numb since my surgery so this was a good sign.  My left leg was still numb which was kind of a blessing.  As my right leg started waking up the nerve pain started.  It was so intense and painful.  The only way I can describe it is as an electric shock up my entire leg.  Since it was so painful all I could do was grab where it hurt, rub it, and cry out in pain.  I tried different kinds of nerve medicine but nothing helped.  I just had to wait for my spinal cord to calm down and get back to normal which would take anywhere from six months to a year from the time I had surgery. 

During the weeks following my surgery and rehab stay, I continued to work on getting my muscles stronger and doing balance exercises to get my balance back.  I hated doing the balance exercises so much!  I was so scared that I would fall.  I didn’t trust myself and didn’t think that I could do the exercises.  I hated it when my dad would tell me it was time to work on my balance.  He would put me through different exercises that would test my balance.  He would be right by me so he could grab onto me so I wouldn’t fall when I started to lose balance.  I had a tendency to just grab onto his arm automatically because I was scared.  I don’t know how to explain the feelings and emotions I had as I tried to do simple tasks.  It was really hard knowing that before my surgery I could have done the exercises without any problem but now it was next to impossible.  There were a couple of times where I would go into my bedroom after a hard exercise and just cry.  As I cried I asked my Heavenly Father what I had done wrong and if I was being punished for something.  I felt like I had done something to deserve what I was going through.  One particular night as I was laying on my bed crying, my dad heard me and came into my room to see what was wrong.  I told him that I felt like I had done something to deserve this and that I was being punished.  He talked to me and asked me if I really thought Heavenly Father was punishing me.  I told him no, and came to my senses that I hadn’t done anything wrong.  This was life and it was just something that happened. 

Just before Christmas I went in to see my neurosurgeon for a follow up visit. He didn’t know why I lost the ability to balance and walk and kept apologizing that it had happened.  I told him it was okay and that it wasn’t his fault.  He had his therapist come in and test my muscle tone in my legs and to do some balance tests on me.  The muscles in my left leg were weaker and the muscles in my right leg were stronger.  This was opposite from when I was tested before my surgery.  I didn’t do very well with the balance exercise where I had to stand on one foot for 10 seconds.  I was also asked to get up off the exam table without using my hands and arms to help.  This was very difficult for me.  I couldn’t seem to stand without using my hands and arms to help push me up.  I couldn’t remember how to just stand up.  I felt really stupid because I couldn’t seem to grasp this simple task.  It used to be a piece of cake but now it seemed impossible.  Before I left, the therapist recommended that I start using a single arm crutch to help me walk.  He didn’t think it was a good idea for me to be using solid objects around my house to steady me in my walking.  He said I was “traveling” when I did this.  On our way home from the doctors my dad and I stopped at the Centerville D. I. where my dad found a single arm crutch for $2.  I wasn’t thrilled with having to use it but it didn’t take me too long to get used to it.  Soon I wouldn’t go anywhere without it and I became way too dependent on it.

On fast Sunday in January I had some questions that I really wanted answered so I prayed and pondered until I received an answer.  I was getting better with my walking but still felt that something was missing, so I prayed to know what was missing.  The answer I got surprised me.  I wasn’t expecting it but it was very clear what was missing.  I finally had to admit to myself that I had lost my faith and trust in Heavenly Father.  I didn’t think He was going to help me.  It was a hard answer to get and I felt horrible because I knew that Heavenly Father had been with me every step of the way and wasn’t going to leave me to struggle on my own.  I repented and knew that in order to show my trust in Heavenly Father that I needed to stop using my crutch and just start walking without help.  So I put my crutch in a corner in my room and started walking without it from that moment on.  I also prayed to know why I was going through this particular trial and the answer I got was because I could handle it.  It was simple and it gave me strength.  I could handle it despite how hard it got. 

I started going back to the Temple the first week in January and I had an amazing experience that made me want to go back each week.  So I did.  I still had my fears about being able to balance and did almost fall during my first endowment session but some sweet temple workers helped steady me.  As I went to the temple each week I was able to see the blessings that were coming.  I loved going because I felt so much peace while there.  My dad was right when he told me that I would be blessed for going.  

As the months went by I continued to get stronger and would try new things.  One day in February or March I decided that I wanted to try going down our stairs to see if I could do it.  No one was home but I decided I was going to try anyways (probably not the smartest thing to do).  I was able to do it and I was so excited! I had made a list of things that I wanted to accomplish and when I did I would know that I was getting back to normal.  Going up and down the stairs was one of the things, so I was able to check that off the list.  One of the biggest goals I had was to be able to go to the temple and walk everywhere I needed to without using my crutch.  Even though I wasn’t using my crutch for most things I would still use it when I went to the temple just to help me keep my balance.  In March I was finally able to accomplish my goal of going to the temple without my crutch.  I was still very slow in my walking but I felt like I was making so much progress. 

Towards the end of March I woke up one day with blurry vision in my right eye.  I thought that I was just having an ocular migraine and that the blurriness would go away.  My vision stayed blurry in my right eye for three days so I decided that I needed to get it checked out.  I went and saw an optometrist on a Friday who did some tests and said that the tissue near my optic nerve was inflamed.  I was told that I needed to come back and see an ophthalmologist that coming Monday.  So on Monday I went and saw the ophthalmologist that my mom sees.  He did some tests on me and told me that I had a blood clot in a vessel in my eye that was near my optic nerve.  He took pictures of my eyes and I was able to see the blood clot in my eye very clearly.  I was put on the blood thinner Eliquis to help dissolve it.  I didn’t know it was about to cause some serious damage.

The week after I started taking Eliquis I started having extremely bad headaches.  I couldn’t get them to go away.  No amount of pain medicine helped and they eventually started feeling like a migraine.  I had to put blankets over my windows in my room because I was so sensitive to the light.  I also ended up getting sick and throwing up every day.  My doctor had prescribed Tramadol to help with the pain.  The medicine made me really tired so I slept pretty much all day.  Since my headaches weren’t easing up I went in to see a doctor to see if they could give me anything to make the headache go away.  I had a CT scan done just to make sure everything was alright.  When the CT scan came back normal I was given a shot of some medicine that was supposed to help the headache go away.  The shot didn’t help and my headache persisted. 

Eleven days after I started taking Eliquis, I remember waking up and eating breakfast where my dad told me that he did not want me fasting (it was fast Sunday) because I weighed 98 lbs.  After I finished eating I went back to my bed to sleep because my headache was still really bad.  I remember getting sick just before my parents left for their temple assignment at the Bountiful Temple but was pretty out of it that I didn’t care that they were leaving.  My mom had an uneasy feeling and didn’t feel like she should be going to do her assignment, but went anyway.  The uneasy feeling didn’t go away and stayed with her while at the temple.  My grandma and brother also had an uneasy feeling.  When my parents came home from the temple, they came to check on me.  When they found me they knew that something was wrong.

 

My dad asked me questions to see if I was alright but I couldn’t answer them.  I couldn’t stand or walk either.  So my parents took me to the Emergency Room at Ogden Regional Hospital where a CT scan was done.  The scan came back showing that I had a Subarachnoid and Intraventricular Hemorrhage (brain bleed).  My parents were told that I needed to be transferred to the University of Utah Hospital because they were more capable of taking care of me.  I was transferred to the University Hospital by ambulance where I was admitted into the Neuro Critical Care Unit. 

More tests were done and a feeding tube was placed because I was malnourished.  The angiogram that I had done on Sunday showed that both of my Carotid Arteries were occluded (blocked).  Because of the brain bleed the cerebral spinal fluid (CSF) wasn’t getting absorbed like it normally does.  The doctors didn’t know how much pressure was being put on my brain because of the fluid build-up, but if I went unconscious they would know there was too much pressure. 

According to my dad I became more “active” Sunday night and started turning from side to side until the early morning hours of Monday.  After being “active” I once again became out of it.  Early on Monday morning physical therapy was sent up to work with me but they had a hard time waking me up.  As they were trying to get me to wake up I had a seizure.  The seizure caused me to become weaker on my left side as well as causing left sided facial drooping.  The doctors knew that the fluid around my brain was putting pressure on it, although I had not gone unconscious.  On Wednesday it was decided that the fluid needed to be drained.  The doctors came into my ICU room, shaved a three inch patch of hair on the top of my head, and then drilled into my skull to thread a tube along my brain to drain the fluid that had built up.  When they drilled into my head the fluid started coming out so it was a good thing that they were placing a tube.  The fluid drained for a week and then the tube was taken out.

I don’t remember any of this but was told by my parents everything that had happened.  I don’t remember coming around until later in the week.  I remember my bishop and stake president were there to see me.  I can also remember pulling my feeding tube out three times but only remember the nurse putting it back in once.  My hands were restrained to the bed which I hated, but it had to be done to make sure that I wouldn’t pull the tube out of my head.  I didn’t even know I had a tube in my head for the longest time.

As the days passed I worked with physical, occupational, and on occasion speech therapy to strengthen my walking, griping, and understanding.  Every couple of hours my nurse would come in, check my eyes, make me smile, and ask me a bunch of questions.  At first I had a hard time answering the questions and didn’t always know where I was.  Towards the end of my stay I could answer without difficulty and got tired of them asking me. 

Multiple doctors came to see me every day.  The neurologist who was over me wanted to figure out why this had happened to me, a mostly healthy, young 25 year old.  Multiple blood tests were done including a genetic test.  Because of what was found in my angiogram of my neck they believed that I had some form of vasculitis.  A couple of Rheumatologists were assigned to my case and came to see me at least twice a day telling me what kind of vasculitis they thought I had.  It changed on a daily basis.  They could never figure out what I had and to this day I still don’t know.   

During my second week in the ICU I had another CT scan on my brain, and then I was also taken over to the Moran Eye Center that is right by the University Hospital.  I had tests done on my eye to see if I had cotton wool spots (white spots that are found in the retina of the eye).  Having cotton wool spots would help support the theory that I had some type of acquired immunodeficiency syndrome.  The tests on my eye showed that I did not have cotton wool spots and that the blood clot in my eye was no longer there. 

After being in the ICU for twelve days I was finally discharged. Once again I came home on a walker because of my left sided weakness.  I only used the walker for a couple of days before I decided that I should just try and use my crutch.  Because I was still pretty weak I did end up falling twice within the first week I was home.  After a couple weeks I started getting better in my walking although I never fully got off my crutch.

In June I had my follow-up appointments with the neurosurgeon and neurologist who were over my case while I was in the ICU.  I had another CT scan that showed that my brain was fine.  The genetic test that I had done came back and showed that I have an abnormality with one of my collagen genes, but they aren’t sure what it means.  My neurologist ordered an MRI (which had to be done at Primary Children’s Hospital because of my pacemaker) because he believed that I may have had some mini strokes.  I was surprised to hear this and wanted to see what the MRI showed.  I had the MRI a couple weeks later and when I read the results (and googled what I didn’t understand) I found that I didn’t have any mini strokes, instead I had had an actual stroke.  I was told that the stroke was not recent and that it was probably caused by my occluded carotid arteries.  My dad and I believe that I had a stroke the night of May 6, 2015, and that’s what started all of my problems.  

Rehab

 I found out on Monday that I had been accepted into the rehab program there at the hospital and that they were just waiting to get insurance approval.  In the meantime a physical therapist from down in rehab came up to evaluate me and then showed me how to use a walker.  I was able to get out of the chair I was in all by myself and use the walker to walk around my room.  I did this a couple of times and the therapist was happy with my ability to use the walker.  We found out later that day that our insurance had approved rehab and that I was now just waiting for a room to open up on the rehab floor.

On Tuesday morning we were informed that a room was available for me down in rehab but I didn’t get moved down there until that afternoon.  I wouldn’t start any therapy until Wednesday morning.  When I was transferred to the rehab unit it was really hard on me.  Even though I knew I needed to go to rehab I didn’t want to go and became emotional.  One of the workers on the rehab floor noticed and told me that I would love it there, but I didn’t believe her.  I text one of my friends and told him that I was scared and that I didn’t think I could do this.  He text me back a little while later and told me that I would be amazing and that I could do it.  That helped but I was still nervous.  After getting settled into my new room I had my IV taken out since I didn’t need it (I was off pain medicine for my back). A little bit later one of the resident neurosurgeons came down and took out the stitches in my back.  My incision was probably 14 inches long so it took some time for all the stitches to come out and thankfully it wasn’t too painful.  For the rest of the day I just got adjusted to being in a new room, met the rehab doctors and tried not to think about starting therapy the next day.  That night one of my nephew’s called me to read me a bedtime story before he went to bed.  It made my night!  My niece and nephews definitely know how to cheer me up. 

In rehab you don’t find out your schedule for the day until the morning of, which makes it kind of hard because you don’t know if you can sleep in.  My first day of rehab started at 7:30 am with my occupational therapist coming into my room to evaluate me and see what I was capable of doing by myself.  Once I had finished breakfast and had shown her that I could do most things by myself we went down to the occupational therapy gym.  For my first session I had to see how long and well I could stand.  To do this my therapist set up a strategy game for me at a table.  Standing was kind of hard and tiring.  My therapist stood right beside me holding onto my gate belt (which looks like a seat belt and normally goes around your waist, but because of my incision I had the gate belt put around my chest) in case I started to fall.  I think I stood for 10-15 minutes before I had to sit back down because I was so tired.  My therapy session ended after 90 minutes and I had to see a speech therapist for an evaluation next.  My dad and I couldn’t figure out why I had to see speech therapy when nothing was wrong with my speech.  We met with the speech therapist for about two minutes before she told us that I didn’t need speech therapy.  We went back up to my room after that for a little break before I headed off to physical therapy. 

I had two physical therapists. One was a student who worked alongside the physical therapist that was assigned to me.  For my first therapy session I used a walker to walk about 300 steps.  I would walk through the occupational therapy gym, down a hallway and turn and walk back into the physical therapy gym.  Once I did that I rested and then went and worked on climbing the stairs that they had in the gym.  I had to hold onto both railings but I was able to climb the stairs.  My form wasn’t great and I had a hard time getting my left foot in the right position to climb effectively.  After climbing the stairs a few times I went back to my wheelchair to rest.  While I was sitting in my wheelchair my therapist had me close my eyes and she moved my feet in different directions and I had to say which way it was facing.  This exercise was to see if I could tell where I was in space.  This was a really hard exercise for me because I really couldn’t tell where my foot was in space.   After my therapy session was over I went back to my room for lunch and to rest before my next Occupational and Physical therapy sessions.  I wasn’t in a very good mood because I really didn’t want to be in rehab.  My dad encouraged me to change my attitude and set goals that I wanted to accomplish in physical therapy while I was there.  I decided to do that and tried to have a more positive attitude.  My goals were to walk without a walker, climb the stairs, get my balance back, and know where I was in space.  For the next two therapy sessions that day my mom came with me so my dad could work.  I don’t remember what I did in occupational therapy but I’m pretty sure I did more standing.  In physical therapy I walked 300 steps again, did the stairs, and worked on my balance.  The balance exercise was probably my favorite thing because I felt like I had made progress.  For the exercise my therapist stood right by me in case she needed to grab onto my gate belt and hold me up, while my mom threw a beach ball at me.  The goal was for me to catch the ball and throw it back to my mom.  I did really well with this exercise.  I think that because I had something to focus on (catching the ball) I didn’t feel like my balance was off.  When I took my eyes off the ball I noticed that I had more trouble with my balance.  Overall I thought the session went really well and I was very happy to be done with therapy for the day.  The rest of the day I just relaxed and took a nap because I was so exhausted from therapy. 

After my first day of therapy I got settled into a routine.  I would sleep until breakfast and my therapy schedule for the day came.  I would eat breakfast and then go back to sleep until I had to go to therapy which started at nine in the morning the rest of the time I was in rehab.  My dad would come with me to my occupational therapy session in the morning since my mom wasn’t at the hospital yet.  Then in the afternoon my mom would come to my occupational therapy session.  My dad made sure that he was always at my physical therapy sessions so he could see what they were having me do so I could do the exercises when I went home. 

My therapy sessions were pretty much the same most days.  In occupational therapy I worked on standing a lot to see how long I could stand without help.  I made improvements every day.  I would practice my balance in OT by playing Wii sports and other games.  To keep my arm strength up I would work out on a couple different machines for 15 minute intervals.  I hated those workouts.  During OT I was also taught how to transfer in and out of bed as well as the shower.  This was pretty easy for me and I didn’t really need to practice.  One of my favorite OT sessions is when I got to cook in the kitchen.  With the help of my therapist and my mom I made some sort of soup and then brownies.  I still wasn’t sure why I needed occupational therapy and I really dreaded going to each session, this started halfway through my rehab stay.  In physical therapy I walked in every session and in each session I increased how far I would walk.  Unfortunately my left knee would always buckle so my therapist would always be pulling up on my gate belt which was painful.  I would also work on the stairs, do balance exercises, and work on getting my core stronger.  I hated the core exercises because they were really hard to do.  I was put on the total gym two different sessions to do squats.  I didn’t think I could do it but couldn’t stop until I had done 10 squats with both my feet and then 10 with each foot separately.  When I worked on the total gym my dad discovered that my left foot was turning in and I couldn’t place it flat of the board to do my squats.  Between my dad and my therapist they were able to hold my foot flat so I could do the squats.  I continued to have problems with this after I got home. 

After my second full day of rehab some techs from radiology came into my room to do an ultrasound on my legs to check for blood clots because I refused one dose of heparin.  The ultrasound took forever and was pretty painful because my legs were still hyper sensitive.  After determining that my right leg was clear they moved on to the left leg.  The tech took forever in one spot on my thigh.  The vein wasn’t compressing the way it should.  They checked the rest of my leg and it looked good.  Later that night the resident doctor came in and informed my parents and me that I had a blood clot in my left thigh.  We weren’t convinced because I have some pretty weird anatomy in my legs.  Since the doctors were sure it was a blood clot they had to decide what blood thinner to put me on.  It was either going to be Coumadin or Xeralto.  They had to talk with other doctors about it, since I have a heart condition they wanted to do what was best.  Until a blood thinner was decided I had to have Lovenox injections which was not pleasant.  These injections are done in the stomach.  Since I had hardly any fat on my stomach it was pretty painful.  These injections were given twice a day.  I only ended up having to have the Lovenox injections twice.  The doctors finally decided that Xeralto would be the best medicine for me.  The only down side to it was that if I started bleeding it would take forever to stop because there was not a counter drug to stop it like Coumadin.  I still didn’t believe I had a blood clot but at least I didn’t have to have my blood thickness checked multiple times since I wasn’t on Coumadin. 

When I agreed to go to rehab I wanted to be done by the weekend because my neurosurgeon said I only had to be there a couple of days.  Unfortunately my therapists and the rehab doctors didn’t think I was ready to go home on the weekend.  They believed that I would benefit by staying until the following Wednesday.  I wasn’t thrilled with this news because I was so ready to go home. 

My dad had been staying with me the entire time I was in the hospital which I was extremely grateful for.  I don’t know what I would have done without him.  He was getting tired of the hospital and really needed a break.  He talked to my brother who agreed to come and spend some time with me on Saturday so my dad could go and do his temple assignment at the Bountiful Temple.  Saturday came and after doing my therapy sessions I got to spend time with my brother.  Before my parents left for the temple my dad showed my brother how to help me if I needed to get out of bed.  We reassured my dad that we would be fine and he finally left.  I was so happy my brother was there because I needed a break from my dad as well.  We watched a movie and then we went down to the cafeteria to eat dinner.  The only thing that was open was the grill.  We both got something different from the grill, slurpees, and chocolate cake to share.  The only nutritious thing on our trays was an apple.  As we were eating my sister text my brother to see what we were up to.  He text her back telling her we were eating everything dad wouldn’t approve of.  After we got back to my room I talked with my sister, facetimed my sister in-law and nephews, and then we went and wandered the halls.  It was great to get out of my room and just spend time with my brother.  He had been amazing to me during everything I’d been going through. After wandering the halls for a while we went back to my room and found a movie on TV.  My dad came in not very long after.  We were both surprised because we weren’t expecting him for at least another hour.  I had a great night and enjoyed spending it with my brother. 

Sunday came and I was very happy because not only did I have the day off from therapy but I was able to attend sacrament meeting with the little branch that met at the hospital.  When the meeting started the spirit was so strong.  I was overcome with emotion and knew that I needed to be at that meeting that day.  It was a great experience to partake of the sacrament and listen to the talks that were given by a husband and wife who were assigned to the branch.  The members made me feel welcome and I appreciated that.  For the rest of the day we listened to some Sunday music to help us stay focused on the Sabbath day.  We skyped with my sister and I was able to take a nap.  I definitely got the rest that I needed that day.  I felt spiritually and physically renewed.  That night after my mom had left my dad made me go for a walk with my walker.  He pushed me in my wheelchair to a hallway that was deserted.  From there I used my walker to walk down the hall, and then back to my wheelchair.  It was a long walk and it took me forever because I was so slow.  But the good news was that my left knee didn’t buckle once!  That was the first time it hadn’t buckled.  I was very happy about that.  After I made it back to my wheelchair we went back to my room to drop off my walker and then we went on a walk around the hospital.  It was nice to get out of my room and spend some time with my dad talking about different things.  On our way back to my room he asked me a question that made me stop and think for a minute.  He asked me if I thought Christ walked the halls of the hospital.  He told me he knew that Christ walked the halls at Primary Children’s Hospital.  I thought about that question for a minute and the spirit testified to me that Christ does indeed walk the halls of the hospital.  I knew that my Savior was very aware of me and what I was going through.  I also knew that he was aware of everyone else who was in the hospital.  That knowledge really helped me know that I was not alone and that my Savior was on my side and would help me through the hard times.  I already had a testimony of this but it was strengthened that night.

The last two days of my rehab stay seemed to go by so slow. I managed to get through my therapy sessions where I continued to make improvements.  I didn’t meet my goal of being able to walk without a walker while in therapy but I was okay with going home on a walker.  I had made a lot of progress and knew that I would continue to improve at home. 

The day for me to be discharged finally came.  We were hoping to be out of the hospital early but of course that didn’t happen.  It took forever for discharge pharmacy to come and give me my medicine and then wait for the rehab doctors to come and talk with me.  When everyone I had to see finally left we asked my aide to inform my nurse that I was ready for transport to come get me.  After almost an hour of waiting for transport to come my dad decided he would take our bags to the car and come back with a wheelchair to take me to the car because we weren’t waiting anymore.  When he got back to my room transport still hadn’t come so I got into the wheelchair and my dad proceeded to take me out of the hospital.  We made it to the end of the unit before we were stopped by my nurse and the charge nurse who told my dad that he just couldn’t take me.  We were told we had to wait for transport.  My dad wasn’t happy and told them that we had been waiting for almost an hour for transport (my nurse never called them).  He told them we weren’t waiting anymore and that we were leaving.  So we left and I was sure that security was going to come after us.  We got to the car and I was finally free!  It felt like it had been forever since I had been outside.  The drive home was a little painful because of all the bumps but I was happy to finally be going home after spending two weeks in the hospital.

I arrived home the day before Thanksgiving so my mom was in the kitchen cooking when my dad and I pulled into our garage.  Getting up our garage stairs and into the house was hard.  I noticed that my balance wasn’t good and I had a hard time keeping myself upright even though I was holding onto my dad.  I made it in and to our couch where I stayed for a while because I wasn’t ready to try and walk with my walker yet.  When I finally did start using my walker it felt weird at first because I wasn’t used to walking on carpet.  Every time I went somewhere either my mom or dad would be right beside me to make sure I didn’t lose my balance and fall.  The last thing we wanted was for me to fall.  I started to feel more confident using the walker as the day went on and eventually my parents trusted me enough to walk by myself without them having to be near me every time I went somewhere.

Even though I felt like I was making progress at home I still had this fear that I couldn’t do things that I could once do.  On my second night being home my dad wanted me to try and climb our step stool as an exercise.  I didn’t want to do it and kept telling him I wasn’t ready.  He told me I was.  I held onto his arms as I managed to climb onto the first step.  I was pretty scared and wanted to get back down.  I then had to climb to the next stair.  I really didn’t want to do this but I did.  I got to the top step and clung onto my dad and just cried.  I was so scared! I couldn’t feel very well and my balance was terrible.  I was scared that I was going to fall even though my dad reassured me that he wouldn’t let me fall.  Climbing back down was just as hard as climbing up the steps.  I couldn’t feel where my feet were and that’s a scary feeling.  I finally made it back to the floor and have never climbed that step stool since. 

As part of my home therapy a physical therapist would come every Monday, Wednesday, and Friday to work with me.  The exercises I had to do were pretty easy and I didn’t see how they would help me.  My therapist would remind me to take it easy because I was only a couple weeks out of back surgery.  I wanted to tell him that I had done harder exercises in rehab where I was only one week out of back surgery.  I only had this physical therapist for about two weeks and then I just continued my therapy with my dad.  

Back Surgery #3

November 10, 2015, the day of my back surgery was finally here.  As I was one of the first ones to have surgery I had to be at the hospital at 5:30 in the morning.  I was taken back to get ready and then I had to wait probably close to an hour before the different doctors and nurses started showing up.  A resident anesthesiologist came and started my IV.  I wasn’t very happy with him because he didn’t bring an ultrasound machine with him like it specifically said to do on my chart.  He was kind of arrogant and said he didn’t need a machine to get my IV in, I wasn’t convinced.  He did get the IV in on the first try but had to dig around my hand a lot to get the vein.  It was pretty painful and I wasn’t impressed with him.  Soon after that my neurosurgeon came in and went over everything with my parents and me again.  My pacemaker was then checked to make sure it was good and then I was taken back into the operating room.

Once I was in the operating room another anesthesiologist came into the picture as well as other O.R. nurses.  I was given an oxygen mask to hold over my nose and mouth while the resident anesthesiologist placed my arterial line.  Since I hate the smell of plastic I did not place the oxygen mask over my nose and mouth, instead I held it a good distance away from my face.  The first attempt at an arterial line did not work so I had to endure the pain once again as the anesthesiologist tried placing it in my other arm.  Having an arterial line placed is more painful than having an IV placed.  For the arterial line an ultrasound machine was used and the line was finally placed successfully.  I always dread having an arterial line because I always have to be awake when they are placed.  If I didn’t have heart problems then I would never have to have one.  Once all my lines were in place the anesthesiologist took over the oxygen mask I was holding and put it up to my nose and mouth.  Thankfully I didn’t have to endure it there that long before I was given medicine that made me fall asleep.   Normally once I am given the medicine to make me fall asleep I am out until I reach the recovery room and slowly start to come to.  That didn’t happen this time around.  After I had fallen asleep I was intubated and then I woke up, which wasn’t supposed to happen.  I understand enough medical terminology to know what was being said by the nurses and doctors.  They were about ready to turn me onto my stomach to start the back surgery.  I was freaking out!  This had never happened to me before.  I couldn’t open my eyes and I felt like I was paralyzed.  I tried to move my head, arms, hands, and legs, anything that would let someone know I wasn’t asleep.  At the same time I was praying as hard as I could that someone would notice.  I don’t know if someone noticed or if they just decided to give me more medicine because I was soon out of it again and this time didn’t wake up until I was in the recovery room.  That had to be one of the scariest experiences I’ve ever been through. 

I stayed in the recovery room for about a half hour where I slowly started waking up and had to keep asking for pain medicine and anti-nausea medicine to help with my nausea.  I was then taken to the neuro acute care unit where I would stay, while in the hospital.  Once I was settled and made sure my parents were in the room I fell asleep again and tried to sleep off all the anesthesia.  When I woke back up I was a little more with it and then more doctors were called to set up my epidural and other pain pumps.  In order for them to get to the epidural I had to roll onto my side.  It was kind of painful, although I remember it being more painful when I was nine.   Everything got set up and I was given a button I could push whenever I was in pain.  It would administer pain medicine when I pushed it.  I had the pain pump and epidural in while I had to stay flat on my back for two days. 

During my first night my oxygen levels started dropping into the low 80’s, upper 70’s.  Every time I would drop a machine would start beeping.  Since my oxygen would drop every time I was asleep I had to wear a nasal canal to make sure I was constantly getting oxygen.  I hated it and tried to fight it but I didn’t win.  When I was awake I was able to take off the nasal canal because my oxygen would stay in the 90’s but I never stayed awake for very long.  Once I was off the pain pump and epidural my oxygen levels stayed in the 90’s and I no longer had to wear the nasal canal when I slept. 

One of the things I was dreading after the surgery was having my legs being hyper sensitive like they were the last time I had back surgery.  I was hoping this wouldn’t be the case this time but wasn’t surprised to find out that both of my thighs were hyper sensitive.  It’s a very strange feeling and extremely painful.  A single touch to my thighs would cause immense pain.  When blankets were put on me it had to be done very carefully.  The slightest touch of a blanket would cause pain.  My doctors were puzzled by this and gave me some nerve medicine to see if that would take away the sensitivity.  It didn’t.  My dad remembered a medicine I had taken when this happened to me when I was nine.  The doctors didn’t believe that the medicine my dad had mentioned was the right one because at the time it was being tested as an asthma medicine.  After doing some research the PA working with my neurosurgeon came back and told us that it did help with nerve pain.  I was given this medicine but it didn’t really help so I eventually stopped taking it.

Before I had surgery I had in my mind a vision of how the surgery would go.  The surgeon would get all the scar tissue out that had built up from two previous tethered spinal cord surgeries, I would be up and walking a couple days after surgery, and I would be home by the weekend.  Unfortunately that’s not what happened.  That first night after my surgery I asked my parents how it went.  My dad asked me if I really wanted to know.  From those words and my dad’s tone of voice I knew that the surgery didn’t go as planned.  I was told that only a part of the scar tissue could safely be removed.  The rest of the scar tissue had already fused itself to my spinal cord and is strangling it.  The surgeon couldn’t tell what was scar tissue and what was spinal cord.  Not wanting to do anything dangerous he decided to end the surgery and closed me up.  He told my parents that I can never have this kind of surgery again and he didn’t know what the future held for me.  I was surprised by this news.  It definitely wasn’t good and not what I was expecting.  But there wasn’t anything I could do about it.  The surprises didn’t end there.  After two days of lying flat on my back I was finally allowed to start moving my bed up and get into a sitting position and eventually get out of bed and start walking.  I made it to a sitting position and moved to sit on the side of my bed alright.  It was painful but I could do it.  When I got out of bed I had my dad and a nurse help me which was a good thing.  I went to stand up and I pretty much collapsed and fell back onto my bed.  I was dead weight.  It took my nurse, my dad, and couple CNA’s to get me back up in bed.  I found out that I couldn’t stand, balance, or walk.  It took me a couple of days to process this.

  The weekend came and two therapists came to evaluate me.  They helped me stand by my bed but had to hold me up because I couldn’t do it myself.  My parents and I were told that I was a candidate for rehab and that my case would be discussed on Monday.  My brother and his family came to see me and my dad had my brother help him move me to a chair so I could get out of bed.  It took a lot of strength for them to get me from my bed to the chair which was only a couple feet away.  After my brother and his family left my parents and I started discussing all the pros and cons of me going to rehab versus me going home.  The idea of going to rehab did not sit well with me.  I did not want to go.  I wanted to go home and was convinced that I would make more progress at home.  I was pretty emotional all day because I couldn’t believe this had happened to me.  This wasn’t supposed to happen.  After thinking about what to do my dad asked me if I had prayed about it.  I told him I hadn’t.  I hadn’t prayed about it because I was afraid that the answer would be that I needed to go to rehab and I didn’t want that answer.  But I decided to pray about it because I really didn’t know what to do.  My first prayer when something like this, “Heavenly Father, I can’t walk.  I don’t want to go to rehab, I just want to go home.  What should I do?”  I waited and didn’t get an answer.  I then thought about when the savior was in gethsemane and was praying to the Father asking him to take away the bitter cup but then said “not my will but thine be done.”  I decided to change my attitude and I prayed again.  This time my prayer went something like this, “Heavenly Father, I can’t walk.  I don’t want to go to rehab, I just want to go home.  But if I need to go to rehab then okay.  What should I do?”  I waited and after a minute or so a scripture came into my mind.  I turned to this scripture and continued to read past the one verse that came into my mind.  It was D&C 121:7-10.  I likened it to myself and this is how I read it.  7. Sarah, peace be unto thy soul; thine adversity and thine afflictions shall be but a small moment; 8. And then, if thou endure it well, God shall exalt thee on high; thou shalt triumph over all thy foes.  9. Thy friends do stand by thee, and they shall hail thee again with warm hearts and friendly hands.  10. Thou art not yet as Job; thy friends do not contend against thee, neither charge thee with transgression, as they did Job.   This was the answer to my prayer.  I needed to go to rehab.  I wasn’t happy but I accepted the answer.  I told my parents I got my answer and then I just had to wait to hear if my case would be accepted and if the insurance would approve rehab.

 Throughout the weekend I had different physical therapists come and work with me.  They would help me stand up and hold me up as I practiced swaying my body from one leg to the other.  They also had me do some other exercises to help build my muscle strength in my legs which was gone.  Since I figured I would be going to rehab I decided I wanted to be able to kind of walk by the time I got down there.  My dad liked to keep me exercising and working my legs and he asked me on Sunday afternoon what exercise I wanted to do.  I told him that I wanted to walk and that I wanted to take a shower.  He was all for it and he held onto me while I held onto his arms and I started to walk.  I was slow and both of my knees liked to buckle but I made it into the bathroom and was able to shower.  It felt great to have accomplished something.  From that point on I started walking more with my dad. 

My Long Journey Part 2

The week following my initial problems was a rough one.  I couldn’t work because it was really hard for me to walk and I was still in a lot of pain.  Trying to sleep at night was getting ridiculous.  I could only lay down on my bed for about thirty minutes before my leg just started hurting like crazy and would go numb.  I would get up and try to walk around but because my foot was numb I would just trip over it.  It didn’t take me long to discover that I could sleep more if I sat in our recliner and had my legs at a ninety degree angle.  I didn’t sleep great sitting in a chair but better and longer than if I were laying on my bed.  I would start out in my bed then get up when I started to hurt and walk to our living room and sit in the recliner and try to fall asleep.  This went on all week and it made it very long.  Mornings became my best friend.

On May 17, 2015 my family held a special fast in my behalf and then my dad and brother gave me a priesthood blessing.  One I will never forget.  That night I was able to sleep all night in my bed.  I went to work the next morning which was hard on me and I came home very sore and in pain. 

During the week we received a phone call from neurosurgery at the University of Utah hospital telling us that I was being referred to a neurosurgeon who worked at Primary Children’s Hospital but came up to the U once a month to see adult patients in what is known as the Spina Bifida Clinic.  An appointment was set up for me to see this new neurosurgeon on June 30, 2015, seven weeks away.  It was frustrating that my appointment was so far away but at least maybe he would be able to help me figure out what was wrong with me. 

The Friday before I ended up in the emergency room I had received an email notifying me that I had been accepted as a volunteer for Camp Hawkins (a camp for kids with congenital heart disease and their siblings).  I was so excited and felt that this was something I needed to do.  Despite the pain in my leg I worked on getting my endurance up so that I could go to camp.  My parents could see the pain I was in and weren’t sure if I would be able to do camp, but because I am stubborn I said I was going despite the pain. I knew that I was supposed to be at that camp and that Heavenly Father would bless me. My pain had actually gotten a lot better up until the day before I left. 

Camp Hawkins was amazing.  It was fun working with all the other volunteers and interacting with the kids.  I was a day camp counselor the first day, and in-charge of the little kids.  They were so fun and I had a good time with them.  I loved being at this camp because I felt like I belonged.  I met another volunteer there who also has congenital heart defects and it was great to be able to talk with her and find out that we have had the same doctors and some other things in common.  I was still in pain with my leg but I know that Heavenly Father was blessing me while I was there.  I can’t say enough about this camp.  It’s a camp that is near to my heart and I hope to one day go back and volunteer again. 

The week after camp I finally met my new neurosurgeon.  I was really impressed with him.  He listened to me and although he didn’t think my problems had anything to do with my spinal cord he still set up tests for me to do.  I was sent to see a neurologist at the U to have an EMG test done.  This test is where the nerves are tested to see if there are any abnormalities with them.  It was a pretty painful test because a needle was inserted into different areas of my leg.  The test didn’t show anything wrong with me.  No surprise there.   Both my neurosurgeon and neurologist ordered a MRI to see if that showed any abnormalities with my spine.  Since I have a pacemaker the only place that will allow me to have a MRI is primary children’s hospital.  Unfortunately they are always booked so it takes weeks to get an appointment.  One was set up for a month later, August 3, 2015. 

The day of my MRI finally came.  My mom and I went down to Primary Children’s and I found out as I was getting checked in that the MRI involved contrast which meant I would have to have an IV.  Everyone has a really hard time getting an IV in me because my veins are tiny and they hide.  It took the IV team a couple of tries and they finally got the IV in with the help of an ultrasound machine.  Once I was all set my pacemaker tech who has worked on me for years came and turned off my pacemaker and then I was taken back for the MRI.  This was the first MRI where I was able to watch a movie to help the time pass which turned out to be a good thing because it was a long MRI.   My neurosurgeon called the next day to tell us that he didn’t see anything wrong with my spinal cord.  It didn’t look like I was tethered but I did have a lot of scar tissue around my spinal cord.  This wasn’t a surprise because I’ve had two previous spinal cord surgeries so there was bound to be scar tissue.

I didn’t feel like my neurosurgeon was right, I knew something was wrong with me.  I started doing my own research.  I prayed about the things I had found and about what my body was telling me.  I strongly felt like I was tethered.  My mom also felt that I was tethered and had felt that way since my MRI.  The last week of August my mom and I went to the Bountiful LDS temple to do some temple work.  Since I was in so much pain we decided to do initiatory ordinances and then afterward go up to the Celestial Room.  When we got into the Celestial Room we were the only ones in there for about ten or more minutes, which doesn’t happen.  While sitting in the Celestial Room I prayed once again to my Heavenly Father about the things I was feeling.  I got an answer that confirmed what I was feeling.  I was grateful to have gone to the temple that day.

Since I knew the neurologist wouldn’t get the MRI results for a little bit I decided to try a nerve medicine called gabapentin that was recommended.  It’s a medicine that takes around six weeks to build up in your system before you can tell for sure if it is working.  The hope was that it would take away the pain in my leg.  I was prescribed 300 mg three times a day.  Taking 900 mg of this medicine everyday got old after a while.  It made me so tired.  I would end up sleeping most of the day and I hated it.  When I went back to see my neurologist in September he upped my dose to 1800 mg per day.  I never made it there.  After taking between 900-1200 mg a day I decided I couldn’t do it anymore and started getting off this medicine.  It took about two to three weeks to finally get off the medicine completely. 

September was a really difficult month for me.  At the beginning of the month I found out that one of my childhood best friends passed away from cancer.  It was hard on me because she had always accepted me for who I was.  She didn’t judge me and showed so much love towards me.  She didn’t care that I had health problems and I really appreciated that.  My heart ached for her family and for her little daughter she left behind.  I love my best friend and have felt her near as I have struggled with my health.  On top of this I was in a lot of pain.  I had a lot of pain not only in my leg but also in my neck and head.  It got to the point where I couldn’t really move my neck and my headaches turned into a migraine.  I tried everything I could think of to get the pain to go away.  I finally went in to a doctor who prescribed me some muscle relaxants.  Those helped a little bit.  Towards the end of the month I got really depressed and hit a low point in my life.  I didn’t want to live anymore.  I wanted to die and finally be pain free.  This feeling lasted for days.  I didn’t know how to keep going.  I didn’t have the strength to go through another day.  One night as I was feeling this way I prayed for comfort and I felt the presence of my great grandparents who are on the other side of the veil come and comfort me.  With that comfort I was able to pray to my Heavenly Father for strength to make it through another day.  I was blessed with that strength and continued to pray for it each day and received it. 

Around the end of September, the beginning of October I started to get two small pressure sores on the side of my left foot.  This isn’t normal.   It meant that more pressure was being put on the side of my foot.  When these developed I really felt like I had a tethered spinal cord again because of what happened when I was nine years old.  When I was nine I started to walk on the side of my right foot.  As I did a pressure sore developed on the side of my foot.  We discovered a little too late that my spinal cord was tethered.  Since I didn’t think that the neurosurgeon I had seen would listen to me I started to try and find a different neurosurgeon at the U and also started looking at different hospitals around the country but didn’t have a lot of luck.  One day towards the end of October I felt prompted to email my neurosurgeon and let him know what was happening.  I emailed him but figured that he would just ignore me.  But to my surprise his office called me that afternoon and set up an appointment to see him in clinic the following week.  I started to think that maybe he would listen to me.  The day of my appointment came and I again explained everything that was going on with my foot as well as some other symptoms that are common with a tethered spinal cord.  He went over the MRI with my parents and me and again told us that there was a lot of scar tissue that had built up.  He explained that when symptoms for a tethered spinal cord appear the person usually starts to decline fast.  I felt like I was, things just seemed to be getting worse all the time.  He finally thought that it might be worth doing surgery on my spinal cord.  There was no guarantee that the pain would go away but I felt like it would.  My surgery was set up for a couple weeks later.  It was a long two weeks and I could feel my health continue to decline. I was living on pain killers almost around the clock because the pain was so bad in my leg and back.  

My Long Journey Part 1

The night of May 6, 2015 is one I will never forget.  I was home alone, my mom was at a Relief Society meeting and my dad was in California on business.  After I had finished reading my scriptures I walked out to our family room to watch television.   I sat on the couch and noticed that my left leg felt like it had gone to sleep.  I thought that was weird but figured it would come out of it in a minute or two.  It didn’t.  The numbness started to get worse.  I tried to walk it out but noticed that it was getting a little hard to walk.  At this point I had the feeling that something was wrong.  I hobbled over to the kitchen and called my mom.  I explained what was happening and she told me to try and walk it out and that she would be home in twenty minutes.  I knew that I wouldn’t be able to “walk” it out.  My leg kept getting more and more numb by the minute.  I managed to get to my room where I laid on my bed and debated on what I should do.  I emailed my dad and told him to call me ASAP.  I figured he would see the email because he was always looking at his work email.  He didn’t call and I started getting more nervous.  I had the feeling that I would be going to the ER that night.  My phone battery was running low so I moved from my bed as best I could to my floor so I could plug my phone in to charge.  While I had it charging I called my dad’s cell and it went straight to voice mail.  At this point my leg was completely numb from my knee down and from my hip to my knee hurt like crazy.  Since I was alone in the house I felt like I could cry and scream out in pain because it hurt so badly.  I knew I wanted and needed a priesthood blessing so I decided to call my brother.  He picked up on the first ring and immediately knew something was wrong because I was crying.  I told him what was going on and that I wanted a blessing.  He told me he was walking out the door and would be there soon.  I figured he and my mom would arrive around the same time since my brother lives 15 minutes away.  After a few minutes I tried to see if I could move my leg so I could get up and be ready for when my brother came.  As I tried to move my leg I discovered that I couldn’t.  So I used my upper body to move myself into my bathroom where I would have something stable to grab onto to get into a standing position.  It was very difficult and when I tried to stand it was like I didn’t have a left leg and I started to collapse.  I somehow made it out of the bathroom and was holding onto the door handle of our linen closet in the hall when my mom came home.  About a minute later my brother came in and picked me up and took me out to one of our kitchen chairs.  He suggested that I be taken to the ER.   As my mom got things ready he gave me a blessing.  He had to carry me out to the car because my leg wouldn’t support me.  He then followed my mom and I to the ER at Ogden Regional Hospital where he stayed for two hours while I waited to hear what was wrong.  The doctor who was assigned to me took my medical history and then did an examination on me.  He thought that whatever was going on was because of my back problems.  He went and called the on-call Neurosurgeon who agreed and said that I should get in to see a neurosurgeon down at the University of Utah Hospital.  I spent two hours in the ER just to hear that.  We got home and my mom had to get my crutches to help me stay balanced and to help me walk since my leg was still numb and hurting.  After we finally got home (around midnight) my dad called to see what was going on, so I filled him in.

The pain was bad that night but I did manage to get at least five hours of sleep.  The next day I was still using crutches to get around.  We called down to the University of Utah hospital to see if I could get in to see a neurosurgeon but since they are a specialist I had to have a referral.  It was pretty frustrating.  My dad had emailed me different questions and things to look for in my leg, because there was the possibility I could have a blood clot.  Some of the things he told me to look for I felt like I had them.  So I went to see a regular doctor who didn’t think I had a clot but would order an ultrasound to make sure.  The ultrasound couldn’t be set up until the next day. 

On Friday, May 8, 2015 I went in for my six month check up with my Cardiologists.  My leg pain started to get really bad.  I somehow made it through my Echo (ultrasound on my heart) and by the time my Cardiologists came in to see me I was dying.  They could tell that something was wrong so they questioned me and told me that an ultrasound had been set up to rule out blood clots and that they would try and work with neurosurgery at the U.  I went and had the ultrasound which showed no clot and as I was heading back to Cardiology they called and told me to go to the ER at the U because that was the only way I could see a neurosurgeon.  I called my dad crying to tell him where my mom and I were headed.  He didn’t object and said that he was headed to the airport and would get in to Utah that afternoon.  My mom and I went to the ER at the U where I had doctors examine me and then went to consult with Cardiology about me having an MRI.  I asked for some pain medicine which I was given orally.  It didn’t do anything and I was really hurting.  I had gotten up to use the restroom and the nurses and the doctor over me could see that I was having a really hard time because of the pain.  The nurse came in to start an IV and give me pain meds that way.  She couldn’t get it, neither could the next person who tried.   Finally an EMT came in with an ultrasound machine and was able to get the IV in.  I was given some strong pain meds and they didn’t do anything but make me loopy.  One of the resident neurosurgeons came in right after I got more medicine and I had a hard time explaining what was going on because I was loopy.  I was told that they were still debating on whether or not I could have an MRI because of my pacemaker.  My dad finally showed up that afternoon and I was so happy to see him.  After another hour or so I was told that the MRI was out of the picture and I was taken back to have a CT scan of my lower spine.  I was able to move myself from the bed I was on to the table for the CT scan even though it was really painful.  The scan only took a couple of minutes and when I tried to move myself back onto the bed I couldn’t.  I was in so much pain that I just didn’t have the strength to move.  The techs in the room used a slide board to get me back onto the bed and I was taken back to my room in the ER.  Once I was back in my room I decided I couldn’t hold everything in any more, and I just started to cry. My parents let me cry and then after a few minutes my dad helped me calm down.  We waited another hour or two before the resident neurosurgeons came in to tell me that they couldn’t see anything wrong with my lower spine.  It did not show that I was tethered again and they didn’t know what was wrong.  After being in the ER for approximately seven hours, they gave me some prescriptions for a nerve medicine and pain medicine and then they discharged me.  I wasn’t very happy and was in so much pain.  Transferring from the bed to the wheelchair hurt so bad that I started crying again.

 

After getting home from the hospital I asked my dad if he would give me a blessing.  I was in a lot of pain and just wanted to be able to sleep.  I had taken some Loratab and was getting close to falling asleep when my dad came in to give me a blessing.  The blessing he gave me was very powerful and I could instantly feel my nerves calm down and I was able to sleep that night.  I slept most of the day the next day.  When I did get off the couch to go somewhere it would take me a very long time because I couldn’t get my left leg to move.  There were a couple of times where I would literally have to move it with my hands.  I didn’t understand what was wrong with me.