Port Replacement and Tonsillitis


[Image shows three spoons on a laptop background. Overlaid is clipart of torn white notebook paper with a red paper clip. On the paper reads “Port Replacement and Tonsillitis”  below is a silver spoon and beneath that is small red text is the URL for Thee Crohnie Grace Blog]

Upon finding out that my port had flipped on me, we had been scheduled to go back up to Cincinnati Children’s to get it surgically replaced. Which meant getting up at 7:30am on Friday for the four hour drive to the hospital.

We got there and went through all the paperwork and the nurse reminded me I needed to take care of my living will and such. I told her I knew what I wanted done, I just didn’t like filling out the paperwork because it was very morbid.

Earlier that week my grandma and I had a very similar talk about what I wanted done if anything  happened. I told her I wanted them to pull the plug and donate whatever organs I could. She was fine with it. Though I imagine if it actually came down to it, she and my family would have a hard time making the decision in the moment. Which is why the recommend doing the paperwork.

So we filled out paperwork, got weighed, got measured and then went back to my room. Room 18. I changed into my robe and socks and patiently waited for the nurses and doctors to come in and ask a billion questions.


[Image shows me on the hospital bed in my gown with a blanket over my lap. I have my head resting on my hand. I have my glasses and my feeding tube.]

We covered a lot. She mentioned by tonsils looked swollen but I told her I had just been having bad allergies lately. We talked about my heart issues. The nurse agreed it was likely POTS since I have Gastroparesis and EDS and they are all sort of lumped together. I showed the nurse my hypermobility trick to which she told me the usual “You shouldn’t do that!” But we all had a good laugh and the nurses and doctors there are always super nice.

Soon the doctor came back and took me to the OR, telling me about her grandma that lived in WV and how she remembered going to visit her grandma and picking black berries and seeing trains everywhere. She joked around with me and showed me the doctor’s entrance to the OR since the other entrance was blocked by an empty bed.

Laughing gas got the IV in and then they pressed on my throat for some reason while they pushed the sedative and I was out like a light.

Thanks to a good anesthesiologist I woke up not freaking out, just in pain. Once that was taken care of I was given a sponge with some water to wet my mouth. My throat hurt from being intubated but that was normal.

They brought my mom in and she noted that they made the dressing of my port into a heart!


[Image shows upclose of my chest. There is a heart shaped gauzed taped to my chest over my port incision.]

Once I was able to get dressed with the help of my mom we were able to leave. I just had to go down to the pharmacy and wait for my post op prescription to be ready.


[Image to the left shows my mom resting her head on top of mine as I attempt to smile. I’m sitting in a wheelchair. In the corner of the photo says “Thanks for Always Being There”. In the photo to the right I’m sitting in the wheelchair alone resting my head on my hand. I’m wearing a polo shirt with kittens on it and leggings with colourful cat faces all over them.]

Once we got the prescription we were free to go and head home. It was about 6pm by the time we left, which meant we wouldn’t get home til almost 10. I fell asleep in the car so it made the ride home feel a lot shorter.

I slept once I got home. My throat was hurting more the next day, to the point where I was having difficulty breathing. After my allergy meds not working I decided to go to our Quick Care. They gave me a bunch of antibiotics and told me I had tonsillitis. Luckily they don’t like to remove people’s tonsils very much anymore which meant while I would have to deal with a sore throat for a while, I would at least get to keep my tonsils.

And that has been my weekend. This week is midterm week for college, so on top of being sick chronically and normal sickness, I am completely exhausted from college. But I have plans in the works for something that while it will take my energy, the reward will be worth it!


[Image shows me in a tank top with my heart gauze showing, NJ tube, no glasses, trying to force a smile but exhausted.]

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