Tuesday, May 3, 2016

Final 5 Days Leading to Surgery

NEW: People You Should Know Podcast: I had the wonderful opportunity to share my story for a new podcast. Click here to take a listen Megan King- Ehlers-Danlos Syndrome Make sure you listen to the other podcasts that are featured. There are so many amazing individuals with amazing stories that you'll most definitely want to take a listen to.

April 7, 2016
It was the beginning of the second day of my life with the halo. I was discharged from the hospital on the second day as well. They were going to send me home on April 6th but because I had an early morning appointment the very next day, my doctor decided to just keep me the extra night because it made it a lot easier on me not having to endure the car ride. For those who aren't familiar, Chicago has VERY bumpy roads. 
First car ride home in the halo. It was also the
first car ride where I did not feel like a
bobble-head toy. It was the most pain free
car ride in quite a while.
When we got home, I was so excited to see my baby...my dog Daisy. As excited as I was, I was also a little apprehensive. I had read a story of a person who was in a halo whose dog barked at them because they were scared of the halo. Fortunately this did not happen to me at all. Daisy was one big bundle of love like she always is. 
Picture says it all. Daisy had no problem seeing me in the halo. She tried crawling all 60 lbs. of her into my lap. 
April 8, 2016
Now that I was home, I was in panic mode. It felt like I had a ton of things to do in preparation for surgery in just 4 short days. The strange thing is, I didn't really have a ton to get done. Unlike the past several surgeries, this surgery was actually in the same state that I live in. The preparations I had to do were learning basic things like brushing your teeth. This involves having two cups. One cup filled with water and a straw, and the other cup empty. You rinse your mouth with the straw cup, and spit into the the empty one. Another thing I had to learn was being aware of my surroundings. You don't realize how big this thing on your head actually is until you start banging into walls, scratching refrigerators (literally), and hitting car doors.
That horizontal line that you see...yep, from the halo...oops
I will say, you learn pretty fast about your surroundings because it hurts every time you hit your head. The biggest preparation I had was getting clothes that would fit me because I owned nothing that would fit over my halo. It was hard trying to get all of this stuff done because my skull hurt from where the pins were inserted, and at the same time my brain was hurting from the stress of a big fusion coming up. It felt like things were moving in the blink of an eye and I had no way to slow it down. I was panicking. Since 2007 it had been nothing but shoulder/scapular surgeries, and now all of sudden I needed surgery on my neck. Necks were unfamiliar territory.

April 9, 2016
The first thing I wanted to get in order was clothing. After all, I would say it's pretty important to have some clothes to wear. Wouldn't you? They say going shopping helps decrease stress too, right? So that's what I did. My goodness...WRONG! I never thought clothes shopping was going to involve so much thought and drive me nuts. It was aggravating. My clothes had to be big enough to fit over my vest, and big enough to fit under my vest. Not only did I need the shirts to be big enough, but I needed the shirts to be stretchy enough because I needed to be able to pull the shirts on like a skirt since I can't get my arms up over my head. Stepping into the shirts like a skirt has been working out really well for me. Fortunately for me, I had some clothes given to me from a friend a few days before the halo installation so I had some stuff to get me by until I could really see what would work once the halo was on. 

(Pins have been cleaned every single day since halo application)
Now, you might be wondering about pin care. They teach you this before you're discharged from the hospital. IT IS VERY IMPORTANT TO WASH YOUR PINS TO PREVENT INFECTION! My mom washes my pins twice daily; once in the morning and once before bed. I have two pin sites on my forehead, and one above each ear. To clean my pins, I was told to use diluted hydrogen peroxide, and bacitracin ointment. Some doctors may advice otherwise so do what your doctor tells you to do. I am not giving out medical advice.

This is what the pins that are screwed into my skull look like. The entire screw doesn't go into the skull. It goes in a few millimeters. You have to be careful hugging people with this halo on. You learn quickly you can't hug like you used to.
This is a side view of how the halo portion is attached to my head
and a front view. You can see the two pin sites on my forehead.
This is what the halo and vest looks like from the back and what
the other side of my head looks like. 

This is our setup of materials. Scissors to cut the Gauze pads, bacitracin ointment, long Q-tips so our fingers aren't near the pins, hydrogen peroxide, and saline solution.

Mom's favorite time of day: Pin cleaning!!
April 10, 2016 First time showering with a halo. It was a flashback to my days of trying to figure out how to shower after my very first shoulder surgery. My guess would be the average person who is in a halo would say it is quite a challenge trying to shower with the halo on. For me though, it wasn't as hard as I had imagined it would be. I've been living in a very medical filled world for the past 10 years. I've had a ton of shoulder and scapular (shoulder blade) surgery; 19 of them to be exact, not to mention the surgeries on my hips, knee, and ankle. I'm sure learning how to shower after all of those surgeries in braces has something to deal with why I didn't think it was too bad showering with the halo. The transitioning phase from being perfectly healthy/normal was gone years ago so I had a comparison of what it was like showering in braces that were much harder. I guess you would say my perception is a bit off from the average person in a halo brace.

This is how I get my hair washed with the halo. My dad is a very handy guy and he likes to make things to solve problems. He made a platform of sorts for me to lay on so my head would hang over the bath tub and it would avoid me from having to put pressure on my arms. My mom or sister could then sit on the edge of the tub and wash my hair for me. I know it is possible to wash your hair by yourself but since my arms don't have that ability I have no clue how to explain that to you.

This was the platform my dad made and how it was intended to be used. The first time my mom and sister washed my hair, we put the platform half way in the tub. Ever since that time the platform has stayed out like this. 
It is VERY important that the sheep's wool lining of the vest DOES NOT get wet. Therefore, it is important to protect the vest. We cut a hole in a garbage bag and then wrapped towels around the vest. 

Putting a garbage bag over the vest
Towels surrounding the vest for extra protection
from water.
Hair getting washed. We use baby shampoo around the pin sites
because it is gentle. We do NOT use conditioner by the pin sites.
My mom or sister will use a little regular shampoo/conditioner at
the bottom of my hair to make it easier to brush out so it's not
like a bird's nest. 
Memory making with my sister :) 

April 11, 2016
Day before surgery. I did a lot of thinking that day and all of those tears that I had been holding back to stay strong finally came flooding out. In less than 24 hours, life was about to change forever. I was scared something may go wrong with the surgery and I'd end up with some sort of paralysis. I was scared the surgery wouldn't be beneficial and make me better. I was scared to go out in public in the halo. I was scared for my family and friends to see me in the halo; especially my nieces and nephews. Besides crying at all the things that could potentially go wrong, I was also crying at the thought that the horrible pain that I'd been living with would eventually be gone once I had recovered enough. I had been fighting for years trying to find somebody to listen to me, and believe me; all that fighting was finally over since getting to Dr. F.

I decided I want to write The Halo Diaries in the event there is just one other person that it may help. I wanted lots of pictures and I wanted to even incorporate video of certain things to give a realistic view of what life in a halo is like. The more I read on the internet, the more I realized I couldn't find a story similar to mine; when I say that, I mean few that ended up in a halo without having some traumatic event. I also wanted to write to interact with those who lived in a halo to get as much advice as I can. Through this crazy medical journey that I've been on, one of the positive things that has come of it is getting to connect with other people to relate to and getting to know their story. 
Daisy working hard helping me write :)
I'm positive I'm not the only one who had some of these fears. I kept telling my family I'm not leaving the house because I don't want to be seen in public. Well let's just say that didn't work for several reasons:
#1: I had to walk the hallways in the hospital when I first got the halo on, and then I had to be wheeled to the car in a wheelchair through the hospital where people saw me.
#2: I needed fresh air and needed out of the house
#3 Most importantly It's not healthy! I've owned every other brace so I will own this brace. I will hold my head up high (literally since my halo has it stuck in that position). It will be okay. 
Next post will be about the big day I had been nervously anticipating...my neck fusion surgery. It will be the surgery that will officially match my age...number 26.

If there is anybody out there that has Ehlers-Danlos Syndrome (EDS), is in a halo, or was in a halo and would like to connect, please free to email me at kingmeg19@gmail.com 

* *If you have a Facebook account, click here and "LIKE" my page: Meg's EDS Medical Journey

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  1. Meg ~ My heart breaks because you cried. It also rejoices because you cried for all the right reasons. I pray regularly that you getfreedom from pain, your halo, your fears, and that life will regain some semblance of normalcy. As always I send my gentle, long distance but heartfelt hugs.


  2. Hi Megan,
    I continue to pray for you! I've not checked into your blog for awhile so I was not aware that your neck surgery already happened. I'm so happy you have such wonderful doctors and wonderful family to support you through the healing process. You are courageous and sensitive to others in sharing your experiences so others may learn along their journey. Thank you!!--Teresa Ropa

    1. Sorry for not emailing you sooner Teresa...things moved so fast the past couple months. I sent you an email though today. Thank you for the get well card :)

  3. Excellent read! May God/Jesus bless your wonderful soul, take away your pain, and comfort you.

  4. Inspiring words. Wishing you all the best. Keep writing!

    1. Thank you! I will definitely continue to write :)

  5. Hi Megan, I found your blog by accident, you are very brave.
    Keep writing as your posts encourage us. I have suscribed to your blog.
    Best wishes from Spain

  6. Thank you Pablo :) I appreciate your kind message!! Best wishes -megan