March Week 4 Mid-Week Update – Feeding Tube Healing

It’s been a rather miserable week that just started to get better today, so for that, YAY! Small victories. Yesterday, we really “embraced the suck.”

The house was a mess because it was Wednesday night church and Boy needed to get out and do something and everyone came home exhausted. There was so much to have done before school and the boys both got up at 5:30am. I was useless. Kristin was just taking a beating from taking care of me, me not helping (lousy loser I am), and taking care of both boys. So I went behind her back and called in the cavalry and Nana was over here whipping the kitchen into shape before we even left for my dermatology appointment. When we got back, the house was clean and I napped and they got stuff done, she did school pick-up, fed the boys dinner, and I made us a nice steak dinner while the boys were upstairs.

I was so darn proud of myself taking care of Kristin just a tiny bit, I confessed before bed that I went behind her back. “Thank you.”

Thank you, Nana. It made all the difference.

“The Tube”

So many of you know from Facebook that the pain from my procedure has been unreasonable. Nurse friends and CFers who have feeding tubes were concerned, so we went to interventional radiology (IR) clinic this morning for them to put eyes on the issue and consult us what they thought the pain issue was… but then last night was horrible.

As part of having an invasive procedure done, I was put on Cipro. We knew before taking my first dose that it does not sit well with my stomach, so I started the anti-nausea meds with the first dose. Amazingly, with my round of IVs before getting listed, I got through all of them with my digestive tract intact. ONE day of Cipro (and the next 2 weeks) ruined me for over a month. I don’t like it, Sam I am.

So that’s where we were the last two nights with Cipro… and we’d had a steak dinner and I was feeling full. All. Night. Long. I started to feel sick to my stomach. I lost so much water overnight from Cipro, I decided to start chugging Arizona fruit punch, then apple juice, then sweet tea. By the time everyone was awake, I was sitting very still so I didn’t lose it. Nothing was emptying out of my stomach and I was filled to the brim with dinner and drink. It wasn’t a fun ride to downtown but I made the most of it with as much hilarity as I could muster.

We walked in the clinic waiting room and I told them my last name. I got a warm greeting by memory and she said she’d go get them to bring me back. We only sat for about 60 seconds in a room of waiting people. We had no idea what they were going to say at IR – “you’re a wimp, this is a painless procedure,” “you’re infected,” “what is CF?” A surgeon in scrubs walked in within about 10 minutes…

Instead, the surgeon agreed the suture was buried in my ab muscle and digging the t-bar into it and causing a lot of pain. “So we’ll cut it today.” There was bruising. There was some tenderness but it wasn’t infected and was healing, though slowly. Then he let us ask him 20-30 minutes of questions about what was going on with the healing, the issues this week, the issues overnight, and future care.

In the end, he suspected that the procedure needle and coring (to get it larger) pierced a nerve in the skin. It can also go through a vessel and take weeks to heal. It’s a crap shoot, plain and simple. I think I also lost the bet on one of the sutures, too. We also learned that the J-tube leading from the button to the jejunum is 45cm long and is the diameter of my oxygen hose: 18fr or 6mm. I thought it was tiny like the pH probe I had for a couple of days to monitor for GERD. We also learned that they replace the whole get-up every 2-3 months, but it just takes a few minutes. Hopefully I only need it replaced 2-4 times before I’m up in weight and have healed from transplant and won’t need it any longer.

After we explained we had the heavy steak dinner because I won’t be able to have undercooked meat (I eat my steak mooing), he said he’d do the same thing. “‘Merica!” I said. He nodded, “‘Merica,” and smiled. We liked him a lot.