Our Life is…

K recently had her G-tube switched out for a GJ-tube.

This was her old tube:

It was a Bard G-button and it was very simple, just one little flap with one little port. It worked great for her for over 4 years. Bard buttons last for a long time usually, because internally they are held in place by a hard, mushroom-shaped stopper rather than a water-filled balloon that can pop. So over the years, she only had 5 button changes. The downside was that they had to be done in the OR under general anesthesia because it is painful to remove and replace this type of button.

This is K’s new tube:

The main difference between the two buttons (and the reason for the switch) is that not only can we feed K into her stomach as we always have, now we can also feed into her intestines when her stomach is not working.  Last week is a WONDERFUL example of why this is important, although we NEVER expected to need the J to that extent.  Anytime K gets sick, her tummy slows waaaay down. Last week, it slowed to a stop. I think it was because unlike most of the illnesses she gets, this one directly hit her GI tract.  Additionally, some days her stomach just does not work great, even when she is not sick. With the GJ-tube, we can still give her the calories and fluids she needs in spite of that.  Yay! Unlike G-feeds, we cannot give her boluses (large volume in a short time period) because the intestines do not stretch to accommodate volume like the stomach. Her goal rates for J-feeds is 64ml/hr whereas her ideal G-feed rate (when all it working perfectly) is 240ml/hr.

Other differences between the buttons are:

– Locking extensions: These lock into place and the Bard extensions did not. It is GOOD because it will reduce feeding the bed/car/couch/whatever due to accidental disconnects. It is BAD because of K steps on her line now, the whole button can be pulled out rather than just the extension (which will send us to the hospital to get a new button placed in IR since it has to be threaded into her intestines under fluoroscopy). We’re having to learn to be more careful about such things.

– Two types of extensions: AMT makes their G-ports and J-ports non-compatible to reduce errors in feeding and giving meds into the wrong port. The G-extension (above) is white and the J-extension (below) is brown

– We cannot give meds via syringe in her G-port anymore due to the different sized ports. This is the ONLY disadvantage of this tube. It is SUCH a hassle to use an extension to give meds. I honestly do not know how we can give her sticky CoQ10 with an extension because it will gunk it up immediately and they are impossible to really clean out well.  (Update: AMT now has a white tip adapter so slip tip syringes to fit into the G-port. YAY!)

– And obviously, this new button is bulkier…especially with extensions plugged into it. It is totally worth it for the Plan B it provides for her.

However, some things have not changed:

-She still gets her feeds via her pump

– And she can still do just about ANYTHING while she is getting her feeds! 🙂

The bottom line is the same as always: We know that K’s tube, in whatever form it takes over time, is probably going to be a lifelong fixture. She does not eat enough to support herself, but we also know that she is prone to ketotic hypoglycemia (high levels of ketones in the blood and urine which means she is burning fat for energy rather than glycogen (this can shift the body into acidosis if not corrected) followed by low blood sugar) because of her metabolic disorder and it is extremely important that we be able to consistently give her body everything it needs, especially when she gets sick. She also has gastroparesis, which means her stomach does not process and move foods through the way it should. She needs a specialized formula in which the nutrients are broken down into amino acids already so her body does not have to work so hard (Elecare, Jr.). We are so thankful for her tube, as it has changed her life in so many positive ways and allowed us to manage her nutrition and fluids at home most of the time and avoid MANY hospital trips. We are fine with the tube sticking around…just like we are fine with her glasses! If it helps her thrive and be healthy, we are all for it for as long as she needs it!