[Image shows three spoons on a laptop keyboard. Overlaid is a clipart of torn white notebook paper with a red paper clip. On the paper reads in black text “Grace vs. the NJ Tube” with a green awareness ribbon below it. At the bottom of the banner is the URL for theecrohniegrace blog.]
Upon losing my NJ tube when it got pulled snorkeling, I’ve been waiting to get it replaced. Which finally got done this Monday. I was told to be there at 7:45 am… of course I didn’t end up getting out of there until after 1pm.
After weeks without my tube, and being extremely moody and emotional, while I normally would have been calm and collected. I was a bit of an emotional mess yesterday. I don’t know why I was so anxious, since I’ve dropped tons of tubes in the past, but yesterday was different. I was terrified for the first time in a while.
We got there and I started freezing up, as I often do when overwhelmed or anxious. My mom finally was the one to tell the nurse that I was extremely anxious and it might help to give me something for my nerves. I think it took them a back a little bit, because they had never seen this version of me, the last time they saw me I was smiling and joking, dropped my own tube, and was out of there in time for college.
Even when the radiologist came in he was like, “I’ve never seen her like this.” Admittedly, he’s only seen me once, but I had impressed them the last time, and instead I was like a small terrified child this time. The last couple weeks have taken their toll on me.
Luckily, they didn’t argue, they just wanted me to be comfortable and they were genuinely concerned about me being so upset. So they brought in a nurse to access my port and give me a bit of Versed to make it easier for me. I was a bit disappointed in myself for not being as “brave” as I’ve been in the past, but as my mom and the nurses reminded me, you can’t be strong all the time and they couldn’t blame me for being nervous.
So the nurse started to feel around for my port, I mentioned to him the struggle I had last time with a nurse who missed my port but held me down while she dug for it still, and so I was anxious about that too. He felt around, said he would try once, if he missed it, he would just try to do an IV cause he said he was really good at those.
So as I put on some music and squeezed my mom’s hand, he cleaned my chest and stuck my port. He then informed me that my port was angled and turned a bit, so he had to go in at an angle as well, and that it was deeper than most. But nevertheless he got it, it pulled back blood fine and flushed fine.
[Image shows me with a blanket around my shoulders, not wearing my glasses, my face is a bit red and puffy from crying, I’m wearing a purple shirt and the IV tubing from my port is hanging out of my shirt.]
Soon the other nurse came in and pushed some Versed before they brought me in the tube. The tube was different than the last one, a bit thicker and with a heavy metal weight that was not very bendy on it. I was a bit nervous still, and it wasn’t until they took me back to their OR room that I was finally able to get it past my nasal cavity. As I was sipping water though trying to get it down my throat I started to choke. I threw up the water and pulled the tube out.
They then gave me a bit of Fentanyl and sent me back to the waiting area, they said they would come back and try again in a bit. So we sat waiting a bit.
Finally they took me back again. They pushed more medicine. Everything after that started to become very blurry, as Versed is known for causing a bit of loss of memory.
They laid me back on the table and the radiologist started coating the tube in some gel and approached me as if he was going to try to put the tube down. This freaked me out, because I’ve never had anyone else drop a tube on me while awake, I’ve always dropped my own tube.
So I asked to sit up and do it myself. They obliged. I sat up and quickly pushed it past my nose but then my nose started bleeding.
I remember asking, “That’s not supposed to happen is it?” Before blacking out. I woke up long enough for the radiologist to say, “The tube is placed, do you want to see?” And he showed me the X-ray. Then I remember waking up in the waiting room again as they taped it in place.
Turns out they had to get a different tube, and used the same tube as last time because they couldn’t get the new tube to advance, which is probably what caused the bleeding, I’m not really sure. I was still too out of it to ask.
[Image shows me, with my feeding tube placed and double taped with white cloth tape. I’m pulling down my shirt a bit to show where the port was accessed.]
They soon came in and told me as soon as I was awake and ready I could leave. I was a bit wobbly when standing so I was given a wheelchair to get to the bathroom and also to leave. When I got back to the room they deaccessed my port and took off all the heart monitors that were on me.
[Image on the left shows me sitting in a wheelchair from the chest up, my port deaccessed and taped, feeding tube secured with lots of tape, and I’m wearing my glasses. Image on the right shows my abdomen area as my mom pulls off the sticky stuff from the heart monitors.]
With that I was free to go home. I got home and slept from probably 2pm to 6pm, still wearing off all the medication they had given me at the hospital.
[Image shows me curled up on the couch, no blanket, sleeping in sweatpants and my purple shirt.]
I started my feeds back up today at 30ml/hr, I plan to increase by 5ml as tolerated. It’s not much but it’s a start. I also sent a message to my doctor about my port being tilted and why that might be and if that is normal, since it makes access complicated which is the opposite of what it is supposed to do. But it’s over with for now, and it’s a new day. Just a reminder that the anxiety doesn’t last forever. It reminds me of the quote from Kimmy Schmidt: “I learned a long time ago that a person can stand just about anything for 10 seconds, then you just start on a new 10 seconds. All you’ve got to do is take it 10 seconds at a time.”
Just gotta count to ten and start again. 🙂