Total Parenteral Nutrition was explained to us as a last resort option when I was put on a failure to thrive. There are large risks associated with it because a line infection could lead to sepsis. As scary and real as these risks are, we believed this was the best course of action to take based on my symptoms and condition of health at the time. At that point it had been many days since I had eaten and was very much a life and death scenario. There was not an option, it was either this or death.

On August 18th, 2021, I was as ready as I could’ve been for the procedure. Two doctors came in and explained how the procedure would work. My dad was asked to leave the room since they were about to clean and prep the room to be sterile.

They did an ultrasound of my arm to find a viable vein to use that would be large enough to hold the PICC line inside. They normally use the right arm since it is easier to thread the tubing from there into the superior vena cava. However, with the ultrasound there wasn’t a large enough vein for them to use on my right. They searched my left arm with the ultrasound and luckily, they found a large enough vein to use.

I requested some anti-anxiety medication beforehand since I didn’t know until right before the procedure that I was going to be awake the whole time. Unfortunately, the medication did little to nothing. My heart rate was still tachycardic and I was stressed out.

They put a hair net on me and laid out surgical drapes over my body. My left arm was stretched out and I was told to turn my head to the right (away from my arm) because it would be easier to thread the tube up that way. They said the 2nd doctor would manipulate my neck as needed so the tube doesn’t accidentally lodge up into my neck.

They gave a local anesthetic injection which stung but wasn’t bad and then began the procedure.

I couldn’t necessarily feel the tube going in, but I could feel the doctor pushing hard against my arm as if you were trying to get the last bit of toothpaste out. This sensation of them struggling to push it in gave me vasovagal syncope.

I suddenly had a drop in blood pressure and began dry heaving. I let them know and as one was finishing with my arm the other gave me a bucket by my still turned away head, to throw up in.

After the procedure was finished, I was in a lot of pain. I was crying and everyone was trying to calm me down. I had the sharpest pain in my left collarbone and was super nauseous. They brought in a portable chest x-ray to check the positioning of the PICC line.

After the x-ray they saw that the PICC line had accidentally coiled in my vein in an area near my collarbone which is what was giving me so much pain.

They called to see when I could get it replaced but the soonest was the next day.

To attempt to make me more comfortable, I was given many lidocaine patches to rest on my collarbone to try to subdue the pain.

After the procedure I had numerous doctors come in and apologize for the coiling since they said it didn’t happen frequently.

I was able to see my dad again after the procedure, but I was feeling even worse since I was going to have to wait another day to get nutrition started (since the whole time I was just on saline). Since the whole flare had begun in June, I had dropped close to 20 lbs. in weight, and couldn’t wait to be back on nutrition in order to not continue dropping further. Malnutrition gives a lot of awful symptoms, and my body was more than ready to get out of it.

I had a lot of trouble sleeping that night between my collarbone pain, arm pain from the site, on top of all my symptoms I already came in with (like my esophagus spasms and abdominal pain).

Read what happens the next day in the story titled, “Let’s Try This Again! I.R. Replacements”.