Braced for Life
It all started at a routine checkup the Dr. noticed that my back was shaped like an s. He requested an X-Ray to be done ASAP.
After My appointment I went to get the X-Rays done. Three weeks later the phone rang and the Dr. called stating that I need
to go to the Orthopedic specialist ASAP. After a thirty minute ride to the Orthopedics office I went in and sat down in the
waiting room. Ten minutes later the Dr came into the waiting room with a Prone Cart. He told me that I needed to be strapped
into it because it's standard procedure when dealing with a curved back. Little did I know that this would be the beginning of
a life time in a Brace.
Once in the Exam room the DR unstrapped me from the Prone Cart and lifted me onto the bed. He said he had to do this because
I will need one until further notice. He then checked with the casting room if they were ready. They were I was lifted back
onto the Prone Cart and strapped from head to feet then I was given a sedative to make the casting easier.
In the casting room there were two phases 1 to cast for the brace then two one to cast for the three weeks waiting for the brace.
I was unstrapped from my prone cart and lifted onto the casting frame then I was stretched until my spine was straight.
the casting began around my hips then went up around my head this was for the brace that I was getting. and hour later
I was cut out of the cast mold for the brace then was re-casted in a full body cast that I would need to be in for the three weeks
the body cast went from head to toe and both arms. the DR said this was needed to keep me straight for the brace.
After the Body cast dried I was then put on my cart and wheeled to a waiting van to bring me home. When I got home a nurse was
waiting to help me for the three weeks I was in the Full Body cast while my brace was being made. I was then wheeled to my room
sill on the prone cart strapped down. The nurse told me that she will help feed me and bath me as well as take me on walks.
The next morning first full day of the body cast I was woken up still in the Prone Cart. I was wheeled to the kitchen to have breakfast.
The nurse fed me cereal because I needed a lite diet so the brace would fit the end of the three weeks. that afternoon she took me outside
for fresh air. the day went by fast it was time for bed. the Nurse told me she had to add something for me at night only to help me sleep.
she put a CPAP mask on because that would help me breathe in this tight cast.
After the three weeks the van came to get me to bring me back to the orthopedic hospital or the next phase of my treatment.
when I got there the Dr. pointed out that I would need a full ridged body brace and a ventilator because my back was crushing
organs. They wheeled me into the casting room to cut me out of the cast. I was lifted into the frame then they cut me out.
I was so weak because of the casting. They then put me on a hospital bed to be wheeled to the OR for the placing of my trach. After that was placed I
was hooked up to a ventilator and wheeled to my room to recover. the next morning was the day I get my brace. the Ortho said this brace was
designed to be on me 24/7 he also added leg braces because he noticed I lost muscle mass while in the cast. the whole brace was made of
rust proof metal. and had no straps. They started with my legs the leg braces were solid metal and plastic riveted together. and had locking hinges
then they went up to my hips they wrapped riveted steal that were custom cut to cover my body. They added a bar in the front and back then built up
covering my chest then up my shoulders and to a steal neck collar with a spot for my trach. then they went up around my head and fastened it to the
bars that were on my back. after that I was re-attached to my vent. they then told me I would need a wheelchair because the brace isn't walkable in it.
I was put back onto the Prone Cart until the Wheelchair was in, the Prone Cart had me strapped down from head to toe, at-least I could use my hands for now
I was given prism glasses so I could see where I was going even though the nurse had control of the cart. I was wheeled out to the waiting room to wait
for the van to get me and bring me back home.
Three weeks later I was settling into my new norm with this heavy bracing, the phone rang and it was the Dr. He said come to the clinic my chair is ready.
The van picked me up still strapped into the prone cart and on the vent to help me breath because of the tight confines of the brace. the Brace was made with
rust proof and water proof metal it when from my hips connected to the leg braces up my torso, around my chest and shoulders. I couldn't move my body in it I was
held rigidly. There were no straps the only way to have it taken off was with tools the Dr had. the van pulled up to the clinic I was wheeled into the waiting room.
Few minutes later the Dr called me to the Physical Therapy room. we got in to the room there was a new Wheelchair with hand controls and a spot for the Ventilator.
They lifted me into the chair and then strapped my feet in, legs were strapped in and waist as well as torso. They then showed me how to operate the chair
the Prone Cart will be used for night time use but the Wheelchair will be used for daytime. After the appointment we went to a pizza joint for lunch
It was hard to eat with the brace and ventilator. But managed and after eating lunch we got a call from the Dr to see how things were going.
six months later still using the Wheelchair and on the Vent the Dr called and said time for modifications to the brace as well as another procedure
to help me be more indipendant. back to the clinic I went. the Dr called me to the room. this room was different than the usual ones. they had pullys and straps
they undid all the straps on the chair lifted me up onto a bed started to undo the brace and leg braces. the Dr said to me for the next phase.
I was wheeled to the OR and they inserted a G-Tube. after recovery the DR said I would need to be tube fed because they would need to control my weight for the new brace
after recovery they wheeled me to the casting room for the cast for the brace and the cast for me to be in whil the brace is being made.
The cast will need to cover the entire body this time, even thogh the dr said I'd be more indipendant but found other issues.
They casted my legs, hips Body, Head, and arms and hands for the Brace. the Brace will cover every inch of the body and it won't be able to be removed.
they then cut the cast off and then put be in a full body cast to support my weak body while the brace was being made. I would need to be placed into a hospital bed
while the brace was being made.
Three weeks later and now over a year of being braced and casted. it was time for the new Full Body Brace. hey wheeled me to a room where they Brace
was sitting on a table. they cut be out of the cast and then lifted me into the back half of the brace. then the frond half was put on me it covered me from head to toe
the only openings was for my nose ears mouth eyes trach and g tube. it was made of waterproof medal and wasn't see through so I could basically have
just the brace on. after the brace was put on I was put onto my prone cart. this will be the new norm the Dr said he will see me in two years. I was strapped down and
hooked back up to the vent. and Wheeled to the van to take me home. the new brace was made of carbon fiber and water proof metal. It was riveted together
covering my entire body and had vents in it to help with sweating in the hot summers. I was also given a heated blanket for the cold winters because I would have
the brace on.
While in the brace and hooked to the Vent I laid there 24/7 had round the clock nurses help me with every day things. I was able to get a ride to the park
for fresh air. but unable to move do to the ridged brace the brace also was so tight that the vent was still needed to help breathing. the G-Tube was to
control my diet I was ved at night while I slept and once during the day.
three weeks after the DR called saying he needed to add something to help me out. we went to the clinic he told me the orthodontist needed me
they took impressions of my teeth for a non removable bite plate. it'll be warn 24/7 he found that my jaw was damaged by the bracing.
two weeks later the orthodontist called. the plate was in. they had me open wide and put in the bite plate and glued it in. now I was going to need to use an
audio machine to help with communication. the bite plate cover all my teeth and glued in so it wasn't removable until the DR was ready. with the Bite Plate in they
added a bracket that will be attached to my full body brace. the brace. They added a catheter to help with releaving. the DR said see you in a year.
Here is the new norm for a year fully braced and immobilized as well as muted and on a vent and liquid fed. they set up the Prone Cart with a camera
on the front to a monitor near my face so i could see where I was going. they also added more straps to hold me onto it ankle straps, four leg straps for both lets and
a torso body strap as well as head strap to hold me in. this is also my bed. the nurse lives with me now because I need 24/7 care. she goes shoping with me
we go in the morning when there are less people. after that we head home and she wheels me outside for fresh air. I can't feel the air because of the heavy
bracing but she makes sure I don't get to warm. after being outside for an hour we go inside to cool off with the AC on. the monitor on my Cart is connected to the
TV so I can watch TV. I also have friends visit and it helps with this braces since it's been a year since I was indipendant.
six months later the Orthodontist called and said we need to see him. the next morning we're at the orthodontist they're planning on removing the bite plate
and add a removable retainer. One hour later the bite plate is out and the removable retainer is in, now I can speak a little but my jaw is weak do to having the
bite plate in for six months. that's why the retainer is in that'll be warn at night. after the plate was removed I will still need the G-Tube that'll be
in place for six more months until I see the ortho again. it's officially over a year since I last was able to move on my own. I've adjusted to
the permanent body brace, vent, and feeding tube. with being in active for that time there is a chance I will need a wheelchair for life
because my muscle mass is gone. We left the Orthodontist and went back home. at home I was wheeled in and wheeled to my room because I wanted to get some rest
after the appointment. I was fed lunch from the G-Tube. One hour later I woke up and asked to be wheeled outside for fresh air. we went outside and decided to go
for a walk it was nice to be out even though I was seeing everything laid on a prone cart.
one year after the full body immobilization the Ortho called and wanted to see me, he said bring the wheelchair as well as cloths to wear. this will be the first time
I get to have a shirt and shorts on for over two years. We arrived at the ortho and I was wheeled to the exam room, they lifted me onto the exam bed
the DR said we'll remove the full body race today and put me in a body cast that'll be from the head to waist. I will be fitted for leg braces that will be removable
the Prone Cart will still be used but that'll be night time use only and the daytime I'll be in my electric wheelchair.
they began taking the brace off by unclipping the clips with a tool. it felt weird having air on my body for the first time in two years they then lifted me out
of the back half and placed me into my wheelchair to be wheeled to the casting room. in the casting room they casted me from head to waist keeping my arms and legs free.
Those will have braces on them. they looked at my back and said it looked great but do to the length of time in casts and body braces I would need to be braced
for the time being. This time I would be more interdependent cast will be warn for a year before the brace is back on me they're looking at a design that will
be able to be warn for more than three years without modifications. after the cast dried I was able to head back to the exam room to have my leg braces put on
this time they had hinges on them but they weren't removable they were holding my feet rigid but bent at the knee to help me sit in my chair.
They finished everything and then put shorts and a shirt on over the cast. they lifted me back into the chair. after that they added hand braces that went from my
fingers to shoulders. they then strapped me to my chair with a lap belt, torso straps head strap and leg straps. And hooked me back to my vent.
We returned home and I wheeled my self with the sip and puff feature on the chair for the first time in a year. I am more indipendant but still need a nurse
I was able to roam my house in my chair. the Prone Cart is used for night time only now. The day went by fast and it was time to be strapped into the Cart for the evening
they added straps to accommodate my braces. There were four straps per leg, and a crotch strap for the hips, there was two straps for the torso and shoulder straps for the shoulders
and a head strap for the head. they also added an IV rack for the feeding tube I was to be fed to keep my diet for the new brace because it would be more constricting and
to keep my back in place so it wouldn't colaps. The next morning I woke up but wasn't planning on going out so I decided to stay on the Prone Cart strapped in all day
I laid there researching the new brace I'm getting in a year, it requires me to be on a vent still and a feeding tube, but it also will look like a Lyonise brace but act like a Body Brace.
the Next day I was put into my wheelchair because the DR called and wanted me to come in they need to add something to the chair. We went back to the ortho
they added arm straps because they wanted my arms to stay on the chair. like the Prone cart did. They also wanted me to pick what style brace I wanted. I chose
a full bod brace again because each time I was taken out of if I almost fainted. I think my body is immune to being on it back 24/7 so they decided to ask me
was style materiel I wanted, this would be the brace I'll be in the rest of my life unfortionantly because my back and full body is so week do to the heavy
bracing and casting the last four years. they also told me to get a voice assist machine again I would need it because they want my mouth to had a bite plate
from now on when the new brace comes in.
After that year, they called and wanted me to come in the brace was ready. they told me to come in on the Prone Cart that'll be how I will need to get around
from now on. this time the brace would cover my face but keep my eyes, ears, and nose open, the mouth doesn't need to be open because of the bite plate
but they kept it open in case the plate needs to come out. They told me to have all mt cloths off and come in with a blanket covering me.
Here we are at the Ortho. they wheeled me to the Ortho room and cut me out of the cast and took the old braces off. they first put the bite plate in and glued it in
they then brought the brace in they had to build it around me starting at the bottom of my feet warping around my feet, ankles and legs and held together with rivets
that were designed to not come off then went up my hips around my back leaving my ass open so I could releave into a pan on the cart the brace warped around
my hips and thick carbon fiber wrapped around my torso and connected with non removable clips and rivets. they shoulders and arms were placed at the side of the brace
they they added the carbon/steal parts to my hands and arms. after that they put the head part on. first the back part then the front part. they they added brackets
from the bite plate. they told me that this brace was needed for the rest of my life because they didn't want any movement.the brace was on so tight I needed the vent
to assist and they also added night cap for the brace that would cover my eyes mouth and nose for the night. only. they then put me on a new Prone cart.
This one was designed for the brace onlt they screwed it in and hooked me to a bigger ventilator because it will be needed to breath for me, my lungs were
weak and small because of the brace. they added a voice machine for me to use with my eyes and another rack for the feeding tube. They also added a double
line for that one in my abdomen and two down my nose for different nutrition's. after that they wheeled me out to the van to bring me home. this time they
had me held so ridged I forgot what it was like when I was walking three years ago.
they told me this brace was designed because the treatment wasn't fixable and I would be braced for life. the brace now had Carbon-fiber, steal plates and it covered
my skin so it wasn't see-able. they also added more cameras on the cart so I can see my surroundings when I'm out in public. When I got home I went to my room and got all hooked up
to my home vent and liquids for the night. The Dr said see you for a followup in five years. this will be five years of mute because of the bite plate can't
come out. The new brace has brackets that have me clamped to the Prone Cart the Brace covers my entire body from head to toe. only had openings for the vent, G-Tube, and eyes
nose and mouth but I keep the mouth and nose covered because I don't need them because of the vent and bite plate. the nurse brings me out for walks but I'm riding the cart.
the Dr said my back in straight now but no muscles because of the bracing so I'm immobilized for life. the body brace is colored in light carbon white to and blue to keep the heat from
it. I've been immobile for three years it's the new norm, my friends and family visit daily they even wrote messages on my body brace the nurse said.
fives years past and the Dr called, he wants to see me. back we go to the ortho, this time I stay in the brace. he wanted to see how things are going. He told me my body is accustom
to the vent so that is permanent now. as well as the bite plate. that means I need a communicating machine permanently, they gave me a new updated one
that can be used on the monitor now. they also told me that they nave a new cart that can tilt me up at a 45 degree angle if I want but that will only be
done if I'm not moving. they swapped my cart for the new one. lifting me and my braces up and onto the new one, this one fits the contours of the brace.
I was strapped in with new straps that can't come off. there are now big thick leg straps and a body strap as well as a head strap and arm straps.
The Prone Cart has a Vent machine, two monitors one for the communication machine, the other for the cameras on it so I can see around me. they sent me home.
The next week I got to try out the tilt and it worked and helped me out I could see a little better and was able to see my family and friends at a different angle for the first
times since I was in the wheelchair. The Dr called and said he was wondering if I want a drug to stop my nerves because they're not in use.
I aid yes so he said he'll come up because I don't need to be at the office for it it will be fed through my IV line that they have if I ever needed and IV.
after he came he got ready right away the drug went in but I didn't noticed a difference. then it was done. now I'm a quadriplegic the body was eventually going to shut that down do to inactivity.
It now has been ten years since I was in the body brace and medically paralyzed, the brace and all the medical items is the new me. It's also been years since
I could talk do to the bite plate. I decided to have the mouth part riveted so that was done as well as the nose part. I don't need to wear anything because the brace
doesn't show my body it all wight with a little blue and lots of messages on it. I speak to groups about scoliosis and what caused me to be like this. the condition I have
is non curable.
to be continued
