Our family saga with the NG tube is at an end. It was only in for a week but it felt like years and I have to say it was the most trying thing we’ve been through during this whole cystinosis thing.
The insertion of the tube went pretty much as we thought. They swaddled her up in a blanket and one nurse tried to hold her head still and another inserted the tube. She screamed, cried, choked and gagged and it was pretty awful to witness. The worst part was taping it to her skin because she was so upset at that point and all I wanted was to hold her. And it didn’t help that she was due for a nap. After insertion we cuddled as I tried to calm her down. Over the next hour we learned how to feed her through the tube and we quickly realized that we were in way over our heads.
There is so much work involved in NG tube feeding that no one bothered to tell us about before hand. Before putting anything through the tube you need to make sure that it’s still in the stomach. So first you have to push a bit of air down the tube to make sure it’s clear, then you pull the syringe up to remove some stomach contents. You then need to test it on a pH strip to make sure it’s acidic enough, which means the tube is still in the stomach. Then you can insert water or formula through the tube. If it’s formula, after a feeding you need to flush the tube with around 15ml of water to clean it, and then you need to push some more air into the tube to clear the water out. Oh and all of this Elsie could feel as it went through the tube and into her stomach and she did not like it!
She spent the first hour in fits of tantrums. She’d be calm for a few minutes and then she’d try to yank the tube out, so I’d hold her hands down which would make her scream and cry for a minute and then she’d be calm again… for a few minutes. Eventually we just had to kick everyone out of the room so we could try get her to nap. Once all the lights were out and everyone left she fell asleep in my arms pretty quickly but would wake up and cry everytime I tried to put her down so I ended up holding her through most of her nap, which was only about 40 minutes. After she woke up they re-taped the tube to her face, which was awful, but it was much more secure and she no longer had anything to grab at. After that she was much better and by the end of the day Dave and I thought that this might actually work.
But once we got home and tried putting some formula down her tube it was all over. She absolutely hated having anything to do with the tube. She cried every time she saw her reflection, or anytime attention was brought to it. After speaking with our nephrologist on the phone she recommended that we hold off putting anything through the tube while she adjusted to just having it in. The problem was she never really adjusted. She was constantly rubbing her face where the tape was and she just wasn’t the same little girl anymore. She was much quicker to throw a tantrum, had lower energy, was more clingy to me in particular and wasn’t nearly as happy although she did still have her moments which were nice.
Although we weren’t putting anything through the tube we still had to flush it with water to keep it clean. You’re supposed to do it every 6 hours but even that was too much for Elsie to handle. We were lucky if we could do it twice in a day. The problem was she would get so upset that she’d start gagging and I was terrified of her throwing the tube up because then we’d have to put it back in again.
There is a plus to all of this though. Turns out she likes drinking from giant syringes. When we first had the syringes ready to go to feed through the tube she grabbed one, brought it her mouth and started drinking. Usually once she finished a 60ml tube of formula off she would ask for more! It was amazing and I had no idea she could fit that much liquid into her stomach in one go.
So after a week with the tube we were still barely using it, Elsie was still miserable and Dave and I were both at the end of our ropes. I even had to call my mom in to help because I was so stressed out and depressed about the whole thing I could barely handle looking after Elsie. I sent an email to our renal clinic nurse asking if we could meet with our nephrologist and discuss the possibility of taking out the tube and the reply I got was keep trying with the tube and our doctor was not available. For some reason this email just broke me. I haven’t felt that depressed and hopeless about the whole situation since she was diagnosed. I decided that it was time I really took a stand for Elsie’s care and started doing what I felt in my heart was right.
So we took the NG tube out. It wasn’t a decision that we took lightly. We looked at all the pros and cons and in the end agreed that there were far more cons than pros to keeping the tube in. The big deciding factor for us was that through Elsie’s new found love of drinking liquid from syringes we were now getting very close to the recommended 1.5 litres of fluid into her per day. And it was way easier feeding her orally than through the tube. The difference once we took the tube out was immediate. We took it out just before dinner and by the end of the night we had our happy, lively little girl back. I can honestly say that I have no regrets from our decision to take out the tube.
We meet with the surgeon tomorrow to talk about getting a G tube inserted and after the whole NG tube business I am much more on the fence about this procedure. But thanks to our experience with the NG tube Dave and I now know what questions to ask and what we need to know in order to make a better, more informed decision regarding Elsie’s care. The path right now is still very stressful and bumpy and my outlook as of late has not been very positive but I know that although there are hard decisions to be made as long as Dave and I keep Elsie’s best interests in mind and have the support of our family everything will be okay.