2 weeks post surgery

So much has happened it’ll be impossible for me to remember everything but I’ll try to stay in chronological order.

There I am with markers on my head. They did the MRI with these things on so they could know exactly where to slice and dice. I remember this part but it’s pretty fuzzy. I do remember being in the MRI machine and hitting the alarm button because I started freaking out. Luckily they got all the images they needed to before that happened. Side note: I came back for an MRI post op and I had an oxygen tank under my bed. You’re not supposed to have anything metal in an MRI machine. Once they slid me out, I heard a loud “thud.” That was the tank falling down. I’m glad I wasn’t still in there.

I woke up the morning after the 18 hour surgery with a breathing tube in my mouth. There were people all around the bed, Kelsey was there and says I just stared at her. I surprisingly stayed calm while they pull the tube out. I remember asking why I was upside down over and over again. I was lying flat but something was up with my nerves that made me feel like I was being held upside down. I had a tough time letting that one go, I must have asked 10 times why I was upside down.

Here I am in the ICU where I spent the next few days.  They checked my vitals constantly, and then later hourly, and asked me to do things like smile, puff my cheeks, shrug my shoulders, etc to make sure I could still move both sides. I could understand questions clearly but it took me a while to respond, it was hard to get my brain to work again. I could tell I was going to be fine, everything was just slow. Also, my left vocal cord is paralyzed, so I could barely get a whisper out and swallowing was all but impossible. A few nights in the ICU were really hard. I couldn’t sleep well despite the pain medicine and somehow the call button on my bed didn’t work. No call button and no ability to yell meant no help. I tried whispering for help several times to no avail. Later someone told me the bed was unplugged and that’s why the call button wasn’t working. Awesome.

60 staples. Just had them removed yesterday. Not pleasant. I think when I was being rolled around outside the operating room I heard something like “it’s not everyday you see a bilateral craniotomy.” Felt like some docs were trying to scrub in just like on Grey’s Anatomy.

I’ve been home for a few days now, every day gets better. I can move around, go up and down stairs, eating a bit more. Oh, here’s some fun facts. Pre op weight = 180 lbs. Weight 2 days ago = 168 lbs. No bowel movement for 12 days. That’s right 12 days. Post bowel movement weight = 165 lbs. I’ll save the gory details, but 3 pounds! That’s a lot of poop.

Pathology. Grade 2 ependymoma as expected. Meeting with oncologists next week to figure out start time of radiation and chemo.

Surgery Wednesday to “fix” my vocal cord. It’s a quick surgery. They basically inject me with Botox and it closes up the space in my throat making it possible for me to talk and swallow normally. If there’s any extra I’ve asked they touch me up around the eyes and forehead. There’s an outpatient procedure where they perform this which I tried, but I passed out. I don’t know if it was the probe going up my nose and down my throat or the two needle injections directly into my throat that did it. I had a vasovagal response they think. Not the first time that’s happened to me. I was donating platelets once and the technician said the same thing to me when I passed out.

Ok, that’s all for now. Big shout out to the best wife in the world who is dealing with a newborn, a kid entering the terrible 2s, getting no sleep and still taking care of me. And my parents who have been helping with everything. This would be so much harder without them.