Hi team!! If you’re checking in on this it probably means you already know a little bit of what’s been going on. I suppose a caringbridge would be more practical for this than my janky, all-purpose website, but we’ll stick with this for now.

So, rewind for a sec- November 20, 2019, I had surgery to replace my GJ feeding tube because it had coiled up in my stomach (for explanation of a tube flip, visit THIS post). November 16, 2020, we got some updated x-rays at my request due to suspicious symptoms, and it allllll began. My tube had flipped again- almost exactly 12 months later.

Because of my odd size (i’m small and thin, but an “adult” in medicine) I get a unique sized feeding tube. It has to be specially ordered, since there are none in-hospital. One time my parents and I actually had to drive to the Johns Hopkins medical supplies warehouse on our way to my admission to pick one up ourselves haha. Every surgery, getting this tube is a mess. My mom ends up calling what feels like 45 people before it’s finally straightened out.

We waited for the tube to come in, and finally went in on November 19. They took me back for the replacement, and did not put me fully under sedation. As they started the replacement surgery, I felt every touch and movement. Part of my illness is a severe nerve condition that causes hyper-pain. So where, I suppose (although i’ve never talked to anyone who aligns with this) some patients may be able to tolerate the surgery under light sedation, I cannot. They gave me fentanyl and midazolam. The room was spinning, and I felt their fingers on my tube. The report says they initiated contrast. I remember sobbing. It hurt and I couldn’t talk.

The next thing I heard was them yelling at me, telling me I needed to call and request general anesthesia. They couldn’t finish the surgery. I was sent home, surgery was rescheduled for the following Monday, and I was in bed vomiting with a migraine for 3 days— I was allergic to the fentanyl.

On November 25th, I went in and had a successful GJ replacement surgery. For the next 12 days at home I was recovering.

Unfortunately, the third time seems to be the most painful. I don’t know if it’s because the pain is piling on top of itself now, or if i’m expecting to feel better sooner? But this round is difficult.

We just hit 1 month since this marathon-disaster began. 30 days of surgery, recovery, repeat. Because of the reoccurring flipping of my GJ tube, we’re discussing options of separating the G and J ports- then there are no chances of flips.

We’re hoping to go back to my old GI surgeon for the procedure. He’s in Peds, so it may be tricky to get in. Prayers for that would be very appreciated. Please please please.

All my love,

Jaime