I never thought I’d be happy about Maddison being hooked up to her pump 24/7
Maddison hooked up to her feed pump all day long was something we certainly didn’t want. But her reflux was so bad. So was the pump really worse than catching spit up in my hands all day long…?
I’ve read reviews on j-tubes
Families who had children with terrible reflux and switched to j-tube feeding (small intestine feeding) said it made their lives better. That although their child was attached to their tube all day long, things were better and easier for them. But I still struggled to believe it.
I tried everything to keep her g-tube feeding
But the things I tried to keep Maddison feeding into her stomach just didn’t seem to work:
- slow feeding rates
- upright positioning
- warm ginger water
- bone broth
- blended diet
- chiropractic care
Nothing helped. Her deterioration was gradual at first, then suddenly it accelerated. We got to a place where feeding through the g-tube was no longer an option due to the severity of her reflux. She wasn’t healthy anymore, and my distaste for the j-tube turned into desperation for it.
The tubing is much longer than a g-tube Mic-key as it is fed into the jejunal portion of the intestine, it’s 15 cm (6 inches) long to be exact. With this, we are able to avoid putting anything into her stomach, thus reducing, and potentially eliminating her reflux. The placement of the tubing into the intestines required it to be inserted in the hospital. Changing her button isn’t something I can do myself any more.
Because of this, there is more care required in dealing with a gj-tube:
- Number one: Don’t spin the button! This can cause the tubing to coil and kink inside the intestines
- The valve inside the jejunum and gastric ports will break down and leak with excessive use, so using a barrier padding (g-tube pad) is practically essential
- If it is pulled out, it’s a trip to the hospital. So checking the water in the balloon weekly is super important to ensure it fits snugly
- Flushing the jejunum extension with larger amounts of water to completely clear the full line, we use 10 mL, opposed to 3 mL with the g-tube
- The gastric port still needs to be flushed with at least 5 mL of water each day
- Taping the extension tubes to her body help them from tugging on the button, and hopefully prevent it from being pulled out. We use a Coloplast Comfeel Plus dressing as a barrier between the tape and her skin. That way we aren’t pulling the tape off her skin daily when we wash the extension
For the majority of Maddison’s life she has spat out most of her calories due to the severity of her reflux. This of course was the largest factor in her deterioration and extreme weight loss. Ever since we switched to feeding into her intestine and bypassing her stomach, the formula we feed her is staying inside her body and nourishing her.
Switching Maddison to feeding through the j-tube did indeed save her life. Within the week of the switch, Maddison started to gain healthy amounts of weight! With the weight gain her personality came back as well. Now that Maddison is properly nourished, she has regained the strength to laugh and smile once again.
But she still needs her stomach to be empty
We don’t know why Maddison’s reflux was so bad, and even though at this time we don’t put anything into her stomach she does still spit up stomach bile from time to time. This is why we have to drain Maddison’s stomach into a bile bag all day long. Because she doesn’t digest her own bile, she does miss out on some of the electrolytes. This is why we replace her her water flushes with Pedialyte.
Motherhood certainly isn’t glamorous, but I suppose it’s better to have her bile drain into a bag and not have her spit it all over my clothes. Maybe one day, as Maddison grows stronger, she can keep things in her stomach.
We’ve quickly gotten use to carrying her feeding pump around with her all day long. But it’s a trade off. I’d rather be carrying around her pump than her at risk of choking on her reflux. Not to mention our laundry has been cut in half since making the switch!
But it may not be forever
Her doctors do believe that j-tube feeding will only be temporary for Maddison. Once we get over this hurdle we will probably transition back to g-tube feeding. This can open the doors back up to a home blended diet, even the possibility of oral feeding!
Maddison loves the taste of food, and her swallow is growing stronger. The dream to feed her dinner from the table might not be too far away! That is, as long as her body has the ability to hold her food down. We will just have to wait and see.