April 13, 2016 Post-Op Day 1:
It was post-op day 1 after having my neck fused from a posterior approach, C3-T2, due to Ehlers-Danlos Syndrome (EDS) which made my neck majory unstable. There really wasn't too much that happened this day because I wasn't allowed to get up. The medical staff wanted me to lay because when I was up, my pain was not controlled well. They tried to get me to sit in a chair but as soon as I stood up my heart rate shot up to 163, and the pain was horrid not only in my neck, but in my left scapula (shoulder blade) as well. My heart rate going up that high, that fast, ended the adventure of getting me up to sit in a chair rather fast, and it was back to laying down and not moving. I stayed in ICU the rest of the day and was transferred to the neurosurgery floor at 9:30 p.m. My parents told me I had a beautiful view of the Chicago skyline from the ICU room. Since my bed didn't face the window, and I couldn't turn my head, I had my dad take a picture with my phone because I wanted to see what it looked like.
April 14, 2016 Post-op Day 2:
It started off with my mom showing me a picture of the sun rising over Lake Michigan to start my day with a "happy" because the night was very long. I was in a lot of pain, and because of that, I didn't get much sleep (my mom too for that matter). One of my parents always stays with me when I'm inpatient in the hospital because of the lack of function that I have in my arms. As awesome as the nurses are, they can't be there every second to hand me my drink because it's an inch too far, or scratch the top of my head because I can't reach. I am so fortunate to have amazing parents that help me as much as they do. The first several days following surgery are always difficult and this time was no different. No matter how many surgeries you have, dealing with everything that goes on during the post-op phase never gets any easier.
So post-op day 2 was a difficult day. At one point I heard my mom ask the nurse if my face was swollen and if I had bruises around my eyes. When I heard the nurse say yes, and that it wasn't uncommon in patients who are on their stomachs for a long time during surgery to get swelling in the face, and bruising around the eyes from having pressure on the face, of course I had my mom take a picture so I could see what the heck I looked like. Obviously not flattering photos but if I'm going to write about what this journey is like, I have to include the good, the bad, and the ugly.
In the morning, my nurse told me at some point during the day, physical therapy was going to come by to get me moving a little bit, and have me sit in the chair. I knew I had to do this because it's the only way I was going to get better, and I knew it was the best thing for me from prior surgeries. To be completely honest though, I did not want to move at all. I knew how I felt when I stood up the day before, and I didn't want to feel the pain in my neck, and I was scared to feel the same searing pain in my scapula. I knew if I felt that same searing pain, something was wrong with my scapula because I've had the same exact pain before.
Knock...knock...knock on the door. "Hi Megan. We're here from physical therapy. Do you want to try to take a few steps to sit in the chair?" In my head I'm thinking, "No, not really, but thanks for asking" but instead my mouth opens and I quietly say, "Fine".
If I remember correctly, I lasted about 20-30 minutes sitting in the chair. My muscles started to go into spasm and it was time to go back into bed. As soon as I got back into bed, my nurse gave me more pain medication and muscle relaxants. Fortunately I was able to fall asleep for a little bit. When I woke up I had my mom help me get out of the hospital gown and into my clothes. One thing I absolutely hate is being in a hospital gown. I'd rather be in my own clothes. From having so much surgery, my mom and I have a system down and we are able to get me dressed pretty quickly. Compared to getting dressed after shoulder surgery when you have to keep your arm immobilized, getting dressed with a halo brace on is much easier in our opinion.
Unbeknownst to me, physical therapy was coming back later on that day, only this time we were going to try to take a few more steps to go sit in the chair. Oh joy! (insert sarcasm). I appreciate the nurses and physical therapists who were encouraging me and telling me how well I was doing. At the same time it was irritating me because I never in a million years thought I would be dealing with a body like this when my joint problems started 10+ years ago. I would have never thought I would appreciate somebody encouraging me by saying, "Great job! You took a lot more steps to get to that chair than you did this morning!" Thank you to all those nurses who keep their patients motivated.
April 15, 2016 Post-Op Day 3:
In my experience, post-op day 3 is usually my worst day. As luck would have it, that day the medical staff had me up and moving more than they did the previous day. It was quite irritating trying to explain to the physical therapy staff that the main reason being vertical/walking was so hard was because of all the scapular pain that I was having, and that I needed some sort of support for that arm. As always, I got the response, "You didn't have surgery on your shoulder. You had surgery on your neck." In my head I thought, "Well obviously. The halo is a pretty good indicator that something was done to my neck." Regardless, my left shoulder was weak. Since I couldn't hold it up, it was pulling on my neck and it was a vicious cycle that created more and more pain. Finally, a different physical therapist came up with the idea to use a walker that had arm supports. Did it solve the problem? No. Did it help? A bit. Once again, the problem comes down to crappy shoulders/scapulas that aren't capable to really push things. I was/am thankful that she was trying to think of something to help me.
Later in the afternoon the staff had me sit in the chair again. It did go better than before. They also gave me some pain medicine ahead of time so I'm sure that had something to do with it.
Before the day was over, Dr. F stopped by with one of the other doctors that helped do the surgery on my neck. I asked if he had pictures of my neck, and if he did, I wanted to see them. He smiled and was nice enough to show me "the good one's" and let me take pictures with my phone.
As bad as it seems in the moment it does eventually get better even though it may take a long time to get to where you want to be. Even while I wrote this post I could see the improvements that occurred in a matter of 3 days. Does it mean I was healed and didn't have a long way to go? No; but there was progress being made which is what's important. So to those that are at the beginning of some challenging journey, don't feel defeated immediately. When you look back, you will see that you have come far. Everything takes time and recovering from surgery is no different.
Next post will be about the final few days being in the hospital and getting discharged home. If there is anybody that has Ehlers-Danlos Syndrome (EDS), is in/was in a halo that would like to connect, please feel 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
** Follow me on Instagram: https://www.instagram.com/thetravelinghaloofhope/
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| Chicago skyline |
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| Possibly sleeping or I'm just laying with my eyes shut |
It started off with my mom showing me a picture of the sun rising over Lake Michigan to start my day with a "happy" because the night was very long. I was in a lot of pain, and because of that, I didn't get much sleep (my mom too for that matter). One of my parents always stays with me when I'm inpatient in the hospital because of the lack of function that I have in my arms. As awesome as the nurses are, they can't be there every second to hand me my drink because it's an inch too far, or scratch the top of my head because I can't reach. I am so fortunate to have amazing parents that help me as much as they do. The first several days following surgery are always difficult and this time was no different. No matter how many surgeries you have, dealing with everything that goes on during the post-op phase never gets any easier.
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| The "Happy" sun rising in the morning |
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| It's hard to tell in these photos the darker tinges around my eyes are the bruises |
In the morning, my nurse told me at some point during the day, physical therapy was going to come by to get me moving a little bit, and have me sit in the chair. I knew I had to do this because it's the only way I was going to get better, and I knew it was the best thing for me from prior surgeries. To be completely honest though, I did not want to move at all. I knew how I felt when I stood up the day before, and I didn't want to feel the pain in my neck, and I was scared to feel the same searing pain in my scapula. I knew if I felt that same searing pain, something was wrong with my scapula because I've had the same exact pain before.
Knock...knock...knock on the door. "Hi Megan. We're here from physical therapy. Do you want to try to take a few steps to sit in the chair?" In my head I'm thinking, "No, not really, but thanks for asking" but instead my mouth opens and I quietly say, "Fine".
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| It was about 3 or 4 steps from my bed to the chair. It seemed much farther than that. |
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| Wiping away the tears that started flooding from my eyes from the pain inflicted in my neck & L scapula from being vertical |
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| Simply surviving and trying to come to terms with this new reality, and the possibility that my L scapula may be injured once again. |
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| Now that I was out of the gown, one of my parents was able to get a picture of the bandage so I could see. |
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| You can see the smile on the nurse's face on the left |
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| It is moments like these when I wish my shoulders weren't trashed. It was so hard to slowly ease myself into the chair while putting pressure on my arms like this. |
In my experience, post-op day 3 is usually my worst day. As luck would have it, that day the medical staff had me up and moving more than they did the previous day. It was quite irritating trying to explain to the physical therapy staff that the main reason being vertical/walking was so hard was because of all the scapular pain that I was having, and that I needed some sort of support for that arm. As always, I got the response, "You didn't have surgery on your shoulder. You had surgery on your neck." In my head I thought, "Well obviously. The halo is a pretty good indicator that something was done to my neck." Regardless, my left shoulder was weak. Since I couldn't hold it up, it was pulling on my neck and it was a vicious cycle that created more and more pain. Finally, a different physical therapist came up with the idea to use a walker that had arm supports. Did it solve the problem? No. Did it help? A bit. Once again, the problem comes down to crappy shoulders/scapulas that aren't capable to really push things. I was/am thankful that she was trying to think of something to help me.
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| The physical therapist that thought of using arm supports to help me. She helped push the walker for me which was much appreciated. |
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| Sheer exhaustion and pain from the walking |
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| https://www.pinterest.com/pin/AchbV1Lt0hR6vdA_VDEq8ij3W8d0mLu4_VbGDmkioNjFgrufnESXDGA/ |
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| Managed to get a tiny smile |
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| My mom & I |
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| 10 screws down, 4 more to go |
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| Side view |
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| Finally a STABLE neck. Only took some bone chips, 2 rods, and 14 screws later. |
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| https://www.pinterest.com/pin/164944405080205530/ |
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| http://www.quotes-central.com/519-someday-everything-will-make-perfect-sense.html |
* *If you have a Facebook account, click here and "LIKE" my page: Meg's EDS Medical Journey
** Follow me on Instagram: https://www.instagram.com/thetravelinghaloofhope/
You have done amazingly well! God gives halos to angels...you are someone's angel, so please don't stop telling your story. Keep on being strong and enjoying life! You are such an inspiration.
ReplyDeletenice reference to the halo ;-) ♥
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