One Year Mark: Rod Removal Surgery 09/26

Today marks one year since I went for my rod removal surgery. It has been a whirlwind of a year! Full of extreme highs and all time lows, painful losses and incredible gains. I do have a post I’d like to share about the experience, but it’s not quite where I’d like it to be so I’ll probably have it up later this week. 

I’d like to share some photos that I have not posted previously. It took quite a few months before I could stomach the photos, so it feels appropriate that I post them on the one year mark. 

Most importantly, I have to give thanks where it’s due: 


Dr. J and his surgical team are more than talented surgeons: they are true patient advocates in every sense of the word. No other physician has gone out of their way to help me in the way that he has, whether my problem had to do with my spine or my autoimmune issues. I know I can always pick up the phone and ask for his professional opinion.

The nurses, child life specialists, therapists, therapy dog handlers, and the rest of the staff at Joe DiMaggio Children’s Hospital are just incredible, incredible people. They understood the complex issues that came with being a chronically ill patient and made me feel heard, respected, and safe at all times. The pre-op nurses were amazing, kept me calm and worked hard to make the IV process less painful on my swollen RA-afflicted hands. The nurses on the peds floor are truly miracle workers who went out of their way for me multiple times to get me a medication and despite long hours and hard work, always came to help me with a smile. Dr. K was the first person to really listen to me and help me when my pain wasn’t being adequately controlled; she made sure I found relief and managed both my autoimmune-related pain and the excruciatingly painful recovery safely and effectively.

I cannot say enough kind things about Joe DiMaggio Children’s and the staff working there. This was not my first surgery by any means, but it was the first time I received such amazing post-op care. “Thank you” is just not enough. 

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In recovery right after the procedure.

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This was during my 4-day ICU stay, though I couldn’t tell you which day this was taken. You can see how swollen my stomach was. I was giving a thumbs up and smiling. Obviously trying to stay positive! I felt like a beached whale meets a beach ball up until January. That disgusting brown stuff is coming out of my stomach from my NG tube.

Rest of the photos are under a cut because they are a little nasty.

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Meet Lily and Nutmeg, the therapy dogs that made my stay so much brighter! I was on Versed and seriously out of it, but luckily some memories of these two came back a little later :) The white moustache-looking thing is just from the NG tube. 

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Day 05: out of the ICU and onto the peds floor, working with a physical therapist. Ugh, not my best photo! Again, suuuuuper swollen with some awesome 6-day hair (sponge baths do not do your hair any justice, by the way). I have no recollection of this photo being taken.

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Day 09: spinal incision healing well. The scar is significantly better looking than the first one I had. Props to my amazing surgeon for that one.

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Day 09: not for the faint of heart. I was literally spherical with an incision so long the photo doesn’t capture the whole thing. My jeans and shorts didn’t fit for nearly 7 months! The original thoracotomy incision was supposed to be 1/3 of the length it ended up being. We (doctors, myself, family) were not prepared for how extensive the surgery and scar tissue turned out to be, but it was worth it.

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Hospital side table: camera lenses, apple juice, and a spirometer.

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Some of the hardware (what could be salvaged) that came out of my spine. 

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More hardware, including the rods. The small rod was the one pressing on my diaphragm. The other two were irritating joints they shouldn’t have been anywhere near. 

Endless thanks to my family for pulling me through when I didn’t think I could handle a minute more of the recovery process. To my relatives who flew out from California and New Jersey to help out. To friends who came and visited and sent kind messages and cards. To followers who sent me the sweetest messages of encouragement, prayers, and positive thoughts…I don’t know of any words to adequately express my gratitude!

Here’s to making it through a year of intense recovery and medical hell, and to everyone that stands behind me as I make it through the years to come.

16 Notes/ Hide

  1. loiteringdinosaurs said: Congrats on one year, that’s amazing! I think I started following you shortly after your surgery, and your blog has been wonderful ever since. :)
  2. lovelyday2bme said: Congrats on one year…I squealed some through the pictures but I’m happy that you shared your story & I learned something new today
  3. stephernoodle said: Every time I hear about all of your struggles and surgeries I think of what an amazingly strong person you are. Thank you for sharing. I don’t think I could even handle this type of surgery. You are the definition of courage!
  4. mirandaraeallday said: You are so brave! I will definitely pray for you <3
  5. mirandaraeallday reblogged this from chroniccurve
  6. chroniccurve posted this

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