`Its been about six weeks since I got my feeding tube placed. The goal for the tube was to stabilize by blood sugar and regulate my weight and nutrition. I have a very hard time doing this myself due to my Gastroparesis, which is partial paralysis of the stomach. This causes anything I eat to sit in my stomach for much longer than it should causing a variety of unpleasant symptoms. The tube however bypasses my stomach and sits in my small intestine which means less pain and nausea!
Currently I have whats called an NJ tube or NasoJejunal tube. It is a temporary tube that goes up the nose, down my throat, past my stomach and into my jejunum (a part of the small intestine). I’ve made lots of progress since the tube was placed! I’ve started gaining back some of the weight I’ve lost, and my blood sugar is much more stable. Not perfect, I still get the occasional low, but so much better overall! After almost a year of poor nutrition I am finally getting some energy and strength back, which feels amazing!
While all of this is good, it took awhile to get here. The first two weeks with my tube were the hardest. Not only did I have to get used to a tube irritating my nose and throat, but we had a VERY hard time getting the tube to run properly at home. I left the hospital off to a good start. So far no issues with the tube and I was feeling ok-ish. Once we got home we started my new formula which was called Liquid Hope. Its a real food blend so there’s no hit fructose corn syrup, dairy, sugar, vegetable oil and artificially made vitamins. Yes those are the main ingredients of most formulas! Unfortunately this means that the formula is much thicker than normal, but it still has to go through a VERY thin long tube. This caused so many clogs and for about a week all we did was unclog my tube 3+ times an hour. Day and night. The pressure would get so high the tubing would burst inside my pump causing a huge mess to clean up. In the first two weeks I got maybe half the amount of nutrition I needed. At this point we switched formulas to another real food blend that was much thinner called Kate Farms core essentials. From then on things just kept improving! I’ve been on it for about a month now and have had no serious issues!
After seeing the improvement I’ve made, we decided that a permanent solution would be best. We are meeting with my GI doctor this Thursday to sort out having a permanent feeding tube surgically placed through my abdomen. This will be much more comfortable and be underneath my shirt where its no longer visible, unlike my NJ which draws quite a bit of attention on my face 🙂 We also are planning to place a Port-a-cath or Port at the same time. This would take the place of my PICC line as a permanent IV access line. Bye Patrick (PICC line) it was a good 8 months!
With all of this happening its been a pretty hectic summer but I finally feel like we are getting to a more stable point. Just in time for homeschool to start back up! I am now in my third week of 11th grade. Last year I wasn’t really able to keep up with my work. As you can imagine when your brain is deprived of nutrients its very hard to concentrate to get work done. With the tube however, I am off to a great start. I have consistently completed all of my work so far. Its only been two weeks but compared to last year where I would maybe get three days of work done a week, I’m calling it a success.
I will do my best to keep everyone updated on the plans for surgery. Thank you to everyone who has been praying for us during this hard time. We truly appreciate all the prayers and support.
“And the prayer offered in faith will make the sick person well; the Lord will raise them up.” James 5:15