I know Rae’s gtube is a curious thing.
I’ve been googling NG tubes and gtubes since we knew that it was a probability that she needed one back in December.
They’re different. It’s not the norm, and it’s kind of AMAZING.
Since we made the decision about the gtube, I’ve answered probably hundreds of questions/comments from different people.
So to answer everyone else’s questions, here you go:
“What’s wrong with her?” or “Still no diagnosis?”
Answer, not really. They, meaning her pediatrician and the geneticist and the neurogeneticist (who we’ve never seen yet, but is “very interested” in her case.) “suspect” she has a mitochondrial disorder. Her doctors are working to try to figure it out, but right now, no. There’s no diagnosis.
“She looks surprisingly healthy!”
Yes, she does. Thanks to the tube. When I think back to December and January and remember Rae, and all the struggles she had with her muscle tone and when they thought she had CP, I remember her very differently than she is now. She got sick even more than she does now. Thankfully, she’s made a lot of really, really great progress since she had the feeding tube placed. We have seen the regression and weight loss when she is off the tube, so we are confident that at least for right now, the tube is necessary for her growth and nutrition.
“So she just doesn’t like to eat?”
No. Eating is not her problem. She eats really, really well for the most part. On the tube, off the tube, it doesn’t matter, she eats really well. She eats a pretty good variety of foods and her calorie intake without the tube is absolutely appropriate for her age and she’s seen a nutritionist to ensure us that we have given her all the adequate nutrition she needs by mouth. The problem is, Rae’s metabolism is not doing her any favors or helping her gain weight. Her constipation and lack of weight gain indicates there is a problem somewhere that gets better when she has the extra nutrition via the feeding tube, which is why she has it.
“When will she get off the tube?”
The earliest we will even try to decrease the feeds is 6 months. Theoretically, in 6 months we could try to wean her, it may go well, and then once she’s weaned, she has to successfully maintain and gain weight without ANY use of the tube for her medications or any supplemental feeds via the tube for at least 6 months before they will remove the tube. So short answer, a year at the very earliest, but most likely longer. The last time we tried to wean she lost weight and had muscle weakness and balance issues that made us put her back on the NG tube within 6 days of being off the tube. I will not be pushing to wean after 6 months, it’s more stress than it’s worth to put that kind of pressure on Rae when we don’t even know what’s wrong. My focus is not on weaning her when we don’t have an answer for why having all the extra nutrition is key for her development and growth right now, I’m afraid it will cause more harm than good.
“How does it all work?”
Okay, this part is confusing.
Yes! Oh my gosh, yes. She’s not in quarantine. I avoid anyone who has had sick kids lately, just because, yes, she has a very crappy immune system and picks up everything under the sun (Just saw our GI last week, less than a week out of the hospital and off all antibiotics from her staph infection and she asked “Does she have ANOTHER cold?” Yes. Always. It’s always something with her). But yes, we can still go out and play and go in the pool and she can climb and jump and be a normal little girl!
Right now, yes. She’s on continuous feeds, pretty much 24 hours a day, with small breaks here and there for bath time, or in the mornings when we switch to her smaller pump. She’s at a rate of about 31 ml an hour for a total of about 740 ml a day. Once her weight gets higher, we will increase the rate and do fewer hours. Starting at 35 ml an hour for 20 hours for several weeks, then 40 for 16 hours for a few weeks etc, until we get back to her normal rate of 55 ml an hour for 10 hours, so long as there are no more leaking issues or weight loss. Right now, I’m okay with continuous since it is not affecting her eating by mouth and the backpack is definitely not slowing her down.