Tuesday, August 30, 2016

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.  

Tuesday, August 2, 2016

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.