March Week 4 Update – Feeding Tube Installed

Thanks for tuning in for another weekly update. Since our last, I got some new hardware installed in the form of a G-J Tube. If you want to skip to the next topic heading, the long and short of it is that my previous worst medical procedure ever was my ablation catheterization for my tachycardia. I’ve since experienced 10 times more pain than that procedure with this one… and it’s still not gone.

Per normal surgical procedures, I had nothing by mouth after midnight and was scheduled for 9am. We got there at 7am and we were soon greeted by a nurse practitioner from interventional radiology who rocked our socks. Informative, great bedside manner, and quick. With her additional info, we both felt better and worse about going forward, but we knew it was best for my future outlook. She was also quick to tell us I was going to be admitted and had a less than 1% chance of going home that night. She was so right.

When they came to bring me back for the procedure, I had one last chance to inform them that this needed to be performed under general anesthesia unless they wanted a horrible situation back there and was very vivid in my description about what would happen. To my relief, they were already prepping general as we came into the operating room.

When I came around, I wouldn’t have known any different if you’d told me that someone went on a rampage and stabbed me with a dagger and was currently twisting it in my largest, strongest ab muscle (as a chronic cougher, I have an epic ab arsenal). Something was out of control and my ab would involuntarily contract 150%, like it’s never done in its life, and not let go. I was yelling that I was a 40 on the pain scale of 10. Bloody murder. I later found out that discussion happened an entire room later after they’d already sedated me again before my wife was allowed in to see me.

This cycle went on for the next 24 hours. Involuntary contraction, 30 on the scale. 6 hours later, 20… until I was telling them it was a 12. We consulted with pain management and they came up with a combination that worked but left me high as a kite every 3 hours. It still didn’t take the pain away but it kept the contractions at bay 20x better than previously and sedated enough that I slept half the time between doses. As long as I didn’t move, I was okay. I needed help doing anything, lest it contract again.

Finally, on Sunday mid-morning, I was able to stand and walk without anything horrific happening. So we were discharged after lunch and we had the whole evening and most of the day until the boys came home.

Yesterday (Monday), I coughed so hard, I broke a suture to some hardware that takes the pressure off the feeding tube site so it can heal. Pain spike on that side. Today the pain spike is on the other side where all the pressure is now… so the hope is there that tomorrow will be okay. I’m on less than half the pain killers I thought I’d be on when we left.

I’ve been assured by several people that this was an abnormal situation. It looks like it took them two attempts to place the tube and chose to go through an immense muscle, making it an unusual case. I don’t think we made the wrong decision but it’s been a lot harder than I ever imagined – and I always imagine the worst to prepare myself.

2,000 calories overnight

Last night was my first night at home with night feeding. We poured 32oz of high-calorie drink into a hang bag and set the pump for 120mL/hr and it went straight into my small intestines. It’s definitely weird, but not bad. I woke up at least every hour for one reason or another, but not the feeding. Waking up with the energy of an entire day’s eating overnight is pretty cool.

Day to day, minute by minute

We are taking each day step by step and trying to enjoy our time with the boys and keeping the house running. They didn’t do too well not seeing us and bouncing from our house to another, but the next day they were fine. Boy (7), seemed to avoid me until after dinner. He has lots of questions, still. So we talked about it more at dinner. Parker was sad but is all fun and giggles again. I just can’t come close to picking him up yet.

We are both finding it difficult to concentrate on the household stuff and work with every phone call being an adrenaline rush. My wife got her one goal done today and I got a solid 2-3 hours of coding done before my body decided it was done doing that level of concentration. It’s time for another dose of pain killer and prop myself up on the couch to interact with the boys before dinner.

Breakthrough: needed to restart muscle-relaxants to return to hospital levels of pain management. Hope that’s my last dose.

That’s our update for now.