Tube Questions

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.

The actual tube that goes in her stomach is right underneath her ribcage, not as low as you would think. There is a bumper on the inside lining of her stomach holding it in place and making sure it doesn't come out. She has a PEG tube, so the tube itself is about a foot long, she will possibly switch to a Mic-key button in August (much lower profile than the PEG tube, looks like a small button right up against the skin, no excess tubing.). Right next to the tape, is the clamp. It puts a kink in the tubing so that if I have to unhook her from the tube to give her medicine, or to flush the tube, or to just take her off the pump for any reason, it's there to make sure nothing comes out of the tube while the adapter is open.

The adapter is the actual part that plugs her into the tubing that goes through the pump. The bigger side that is on the top in this picture is used for medicine, the smaller opening is for when she gets hooked up.

She wears her pump, the Infinity, on her back in a small backpack. It weighs less than a pound!

 We have been so blessed to have been gifted a few backpacks that are made for specifically for tube feeding (and thank goodness for multiples, they almost always end up with formula on them by the end of the day). The feeding bag is hooked around the top of the backpack, ensuring no air goes into the tubing. The pump sits at the bottom and regulates the speed of the flow of formula into the tube. There is a small hole of the side of the backpacks that the tubing goes up and out of to hook onto the adapter.

"Can she be around other kids?"

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!

"So...she eats all day through the tube...?"

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.

"How do you DO IT?"

I have no idea.

We're still figuring little things out. 

Like what's the best and easiest type of clothes for her to wear? 

And what's the perfect amount of formula to put in during the day so none is wasted? 

And how much at night so we don't wake up to the beeping of her pump? 

What's the best position of the tubing in her backpacks? Over the shoulder or around the waist?

Will she ever stop tripping over the tubing?

How do we get her to stop "unplugging" herself and leaking formula all over?! 

What's the best way to maneuver her in her car seat and keep her from lying on the hard tubing?  

Who else needs to be 100% in tune with how all this works in case of an emergency and I can't be there? How do I teach them all this, without overwhelming them or driving myself insane with worry?

When will Big S and I feel comfortable enough to leave her alone in Sunday School or with grandparents even?

And when will things ever feel "normal"??

But these questions are why I'm so open about the tube. There's a lot of confusion about what the feeding tube means for her and what her life is like. But I can assure you, she's a normal 16 month old little girl. Yes, she has some needs for extra nutrition, but it's nothing that's going to stop her or slow her down.

M

If you have any other questions, submit them on the right and I'll add them to my next post.