[Image shows 3 spoons laying on a laptop keyboard in a black and white photo. Overlaid is a clipart of torn white notebook paper with a red paper clip. On the paper reads “MediPort Surgery and Entyvio” with a picture of a small purple Bard PowerPort in the lower right hand corner of the paper.]
I woke up bright and early Friday after a late night with friends watching Critical Role (A livestream D&D game with voice actors). I knew I had to be up early but I also knew that I would be asleep for a good portion of Friday seeing as it was the day of my MediPort surgery.
A while back upon my Crohn’s flaring back up my doctors decided they wanted to start me on Entyvio but after having difficulty with my veins recently I was not thrilled about the idea of having to get infusions that required an IV every 4 weeks. To avoid becoming a human pin cushion for IV attempts, my doctor agreed that a Port would be a good idea. Admittedly, I wasn’t nervous until the day of. My mom mentioned that they might just do like a twilight sedation with local numbing because they said I could have feedings/drinks until 9am. Knowing full well that local numbing doesn’t work on me, the whole idea freaked me out a bit.
We got there at 12:30, even though the surgery wasn’t scheduled til 2:15 because of all the stuff they have to get out of the way before surgery. Weigh ins, meeting with the nurses, anesthesiologist, doctors, surgeons, answering a billion and one questions, the works. Luckily one of the nurses was super reassuring about the fact that they would knock me out completely because since they are cutting into a major vein they can’t really let children stay awake since it could traumatize them.
[Image shows me laying on the pre op bed in the hospital gown given to me, I’ve got short red hair, no makeup on, NJ tube, and arms extended for the selfie.]
The team was all super nice and reassuring. And as they carted me off to the OR I was feeling much more relaxed about the situation, till we got in there. They told me they wanted to start an IV so they could administer medicine for my nerves as well as to put me under, and that they would give me nitrogen gas (laughing gas) to calm me while they tried to find an IV. Unbeknownst to them, laughing gas doesn’t calm me when I’m anxious, only makes it harder to communicate my panic. As they started feeling around, I began to hyperventilate.
They started asking me questions about my tattoos to try to relax me, which I tried to answer to the best of my ability. But soon the room started getting dark. I remember them asking me a question about my crystal tattoo, and I was unable to respond. The room kept getting dark and I heard, “Grace? Grace? Grace?” Almost like an echo. At the moment all I could think was “That’s not even a real word. And it’s gonna be the last words I hear.” I was slightly determined at that point that I was dying. The room went completely dark and then bright white. It felt like an eternity but was probably just a few seconds. I just remember thinking, “This isn’t so bad. It will all be over soon at least. Nothing I can do about it.” I was a lot more accepting of the idea of death than I thought I would be.
Alas, I was not dead, just lack of oxygen because I woke up with an oxygen mask on to replace their nitrogen gas. They asked me if I was okay, let me know they had started my IV finally and the last image I remember was seeing the tiny syringe filled with their knock out medication. And with that, I was out.
[Image shows me laying in a hospital bed hooked up with my port. I have a purple flower crown on and in a hospital gown with my hand resting on my shoulder.]
I did not wake up like this, in fact, I woke up a bit of a mess. I very seldom have a good reaction waking up to anesthetics. Not to mention I was right about how local numbing did not work because I woke up feeling like I had been cut open, which I had. They gave me Fentanyl and Dilaudid which was enough to ease the pain and calm me while we got back to my room. They did an x-ray to make sure it was in the right area. They pulled labs, which drew super easily, flushed it, etc. It worked great.
[Image 1 shows me holding a small grey bracelet with a bunch of papers in the background. The bracelet is rubber and reads “Bard Power Port”. Image 2 shows a card with some papers, the card asks for the Patient’s Name where I sloppily wrote Grace Shockey, asks for the doctor’s phone, the implant site/implant date, notes, whether or not it is a single septum or duel septa. And then a bunch of small words and details about the “Bard PowerPort” along with a pamphlet on the power port as well.]
They gave me a bunch of stuff about how it’s important to let doctors and nurses know in ERs about the port, hence a card and bracelet. It was like the all access pass package. I was still a bit out of it when I tried to fill out the card with a massive sharpie.
Once I was settled in they gave me a Solu-Medrol injection through the port and started my Entyvio infusion. It was a short infusion of only 3o minutes, nothing in comparison to the 8 hours I had to sit for Remicade because of the reaction I had to it. With all the medicines wearing off though that evening I became a bit of an emotional mess, not to mention a familiar tightness in my chest that I had felt before with Remicade. The nurse I had that night didn’t seem to understand when I tried to express my concern, which only overwhelmed me more since verbal communication is not always my forte.
[Image shows my neck to lower chest where they taped up my chest with lots of steri strips around the port. I’m still in the hospital gown.]
The first night was emotionally rough but thanks to netflix and How I Met Your Mother, the night got better. Day two was very boring. They got me stuff to clean up and wash my hair since they didn’t want me to shower while the port was accessed. Afterwards I went on a little bit of a walk with my mom to stretch because I was getting sore from just laying in bed. Ran into the GI Fellow who was on my case for the weekend, who decided physical therapy would be good for me. So he said he would work on putting that in motion for me.
The rest of the day was spent hooked up to their feeding pump, getting more IV steroids, and watching the Food Network Chanel while crocheting with my mom. The nurse I had was super nice as well as the Child Life Specialist. They got me a new gown to change into that was a bit less revealing than the one given to me for the OR.
[image of me in the new gown after cleaning up and getting to wash up. I’ve still got my purple flower crown on, and my black and green glasses, NJ tube, my hand is up fiddling with my feeding tube, I’ve got my fitbit and hospital bracelets on and there’s monitors and stuff behind me. ]
Day three started with Child Life Specialist coming over and asking me what I knew about ports, to which I knew very little. So she left and returned with a puppet, who’s name escapes me. But this puppet was a thing of nightmares. Honestly, it’s face was more terrifying than any needle.
[image 1 has a photo of an orange puppet with buggy eyes, yellow mullet like hair, an an odd open mouth, in a white dress with multicoloured hearts. Image two shoes the puppet with the top part of the dress pulled up as the child life specialist showed me how they access the port.]
She walked me through the steps of accessing and deaccessing the port and how they clean the skin, sterilize everything, and so forth. And she even gave me a book with another puppet in it, that one was blue and named Max. It was pretty easily explained and used simple terms for children to better understand. It made things really simple for me to understand. I was pretty grateful for once to have things simply explained instead of medical term after medical term and using google to understand what doctors say.
That night was filled with more food network and a super nice nurse who I had previously had from my ostomy surgery. It was a pretty boring night filled with crocheting and the new season of Cutthroat Kitchen.
Today we got the ball rolling to go home, they gave me my last dose of Solu-medrol and got the orders to deaccess my port. Which was essentially like a chest wax. The removing of the needle itself didn’t really hurt, just felt awkward. The tape was the worst part since it stuck to the steri strips of my incision.
They gave me a strip to cover the incision while it was still a bit bloody and so it wouldn’t stick to the shirt I was wearing.
[Image shows me pulling down my shirt a little to show the deaccessed port, you can see the bloody steri strips but that’s about it. I’ve got on my black and green glasses, a bright blue shirt, and an awkward expression.]
Once I was deaccessed, they told me that the gauge of my needle was a 20g and 1 inch needle which was important to know for accessing in the future so that the didn’t have to stick me more times to access the port. And with that, we got our discharge papers and we were headed home.
The four hour ride home wasn’t too bad, had to adjust my seat belt to not irritate my chest. I was super glad to get home though and be able to bathe and really wash my hair, because their shower cap of dry shampoo made my hair feel really funny so I was glad to get that feel out of my hair. And now I can relax and let it heal a bit before my next infusion this Friday! It will be my first time getting accessed while awake so that should be interesting. Especially since my port is hardly visible since my vein is pretty deep . But it is all a learning experience and overall makes things a lot easier!
[image of me in the car, got my flower crown on still, black and green glasses, NJ tube, I’m wearing a blue tshirt with the “Cincinnati Children’s” Hospital name and logo and a purple sticker that says “Cincinnati Children’s INPATIENT]