Monday, February 24, 2014

Freedom from G-Tube Dependency: Part 1

In the last blog post, I promised a series on the most frustrating obstacle we've encountered in parenting Josie: G-Tube Dependency.  It's a topic I've avoided addressing for a long time, and as I sit to write about it now, I am still filled with reluctance.  

Josie has had some really terrible health issues to contend with in her young life including Chronic Lung Disease.  Josie was born with unhealthy lungs and during her first year on earth, she required oxygen to breathe and would frequently go into respiratory distress which required immediate hospitalization. In August of 2010, Josie experienced her most severe respiratory distress episode and she spent several weeks in the pediatric intensive care unit on a ventilator.  You can read about that HERE and HERE.  While no one could tell us what caused this strain on Josie's lungs that nearly took her life, one of the theories was that she was aspirating on her formula.  The surgeons made a decision to insert a Gastrostomy Tube (G-Tube) directly into Josie's stomach.
The G-Tube prevented further aspiration because instead of sucking a bottle and risking the formula getting into her lungs, Josie had a little port in her abdomen where we could insert a tube, program a feeding pump, and have her nourishment delivered directly to her stomach.
One potential side effect of no longer having oral feeds is that a child can lose his or her natural instinct to eat.  This is exactly what happened to Josie after receiving her G-Tube.  This is different than having a child who is a picky eater or a child who prefers to graze.  Josie's hunger cues were destroyed.  She did not want any food or drink near her mouth.

Over time, this really began to bother me.  It was one more thing that made Josie different - really different.  Any caregiver who kept Josie had to be trained on how to use the enteral feeding pump and that was intimidating to a lot of people.  If the settings programmed into the pump got messed up, you had to be able to reprogram the pump and understand all of the nuances that made it work.  Josie had to be watched closely at all times because if she got a hold of the tubing and pulled, she could easily pull her Mic-Key button out of her abdomen.  Putting it back in would then become an urgent priority, as the hole could close up within hours requiring her to have a whole other surgery to get a new one.  And then there was just the day-to-day inconvenience of having to use medical equipment to feed your child.  You couldn't just throw a couple of chilled bottles and a jar of baby food into a thermal lunch bag and hit the town.  Awhile back, I blogged about having a picnic with the girls.  As you can see, transporting the pump, bag, tubing, and pole to the park along with two children would have been a spectacle to say the least, so we picnicked on our front porch:
  My frustrations with the G-Tube coupled with my desire for Josie to have a life as free of medical equipment as possible led me to start seeking a way to get her to start eating orally again. After several months of being fed exclusively via G-Tube, Josie received medical clearance to start feeding therapy to build her oral motor skills and stimulate her interest in oral eating.  We started feeding therapy with an Occupational Therapist and Speech and Language Pathologist who specialized in the SOS Approach.  The Sequential Oral Sensory approach focuses on increasing the child's comfort level by exploring their food in a playful manner (source).  We were encouraged to have tea parties, have all family members use Josie's cups/utensils at family meals, and allow Josie to experience messy play in her food.
When the goal is a G-Tube wean, time is of the essence because the longer a child uses a G-Tube, the harder it is to teach a child to eat orally.   At the time, I didn't realize there was more than one approach to feeding therapy or G-Tube weaning, but after using the G-Tube for a year-and-a-half and making no progress in SOS feeding therapy, I began to search for other answers.  That's when I discovered a behavioral psychologist who specialized in feeding disorders who had an impressive track record of helping children get off of the G-Tube.  After a swallow study and an endoscopy to ensure that Josie's GI system was in proper working order, we were given clearance to begin behavioral feeding therapy.
What happened next was absolutely incredible.  We became religious about using the behavioral modification techniques that we were learning in therapy,  and within a matter of 3 months, Josie was eating and drinking orally.  Three months of implementing the Applied Behavior Analysis (ABA) approach was all it took, and Josie no longer used her G-Tube for nourishment. 
Even though our commitment to the ABA method was steadfast, and even though her progress was impressive, it was hardly a Pentecostal tent revival in which a preacher laid his hands on Josie and she was freed from her G-Tube dependence.  In fact, it was simply a jump start on a journey that would prove to be anything but easy.

Four times a day, Travis or I would sit with Josie and encourage her through every single bite and sip from a straw.  Josie still did not want to eat.  We just learned how to handle her oppositional behaviors.  Once again, every single care provider had to be trained on how to implement the behavioral therapy techniques to ensure that Josie met her minimum food and hydration requirement for the day.  And when Josie got sick with a stomach bug/diarrhea, we would need to use the G-Tube to get extra fluids in her, as it was next to impossible to get her to drink more than 4oz per meal, 4 times per day.  But we still felt celebratory as she no longer depended on the G-tube for her day-to-day nourishment.

Fast forward to January 2014.  After a fun-filled week of a house packed full of relatives, gifts, and attention, suddenly everyone left - including Dad.  Travis had to take an international business trip and his absence, combined with the holiday routine disruption, left Josie upset and confused.  She acted out by not only refusing to eat, but by throwing every single plate/utensil/cup that came within arms reach of her.  We regressed back to spoon feeding Josie, bite-by-bite because setting a plate full of food on her tray was no longer an option.
These feeding issues that we thought we had conquered suddenly re-emerged with a vengeance and we had no idea what to do.  But we knew where to turn.  I contacted the behavioral psychologist who had originally helped Josie get off of her G-Tube and I begged her to get us into the intensive feeding clinic that they hosted at the University of Iowa.  I was told that the feeding clinic was booked solid through September 2014.  However, the very next day she called me back with incredible news - they had just had a cancellation for February - could we be there next week?  I immediately called Travis and asked if there was any way we could put our lives on hold and drive to Iowa with the hopes that our almost-4-year-old would spend a week in intensive therapy acquiring the skills necessary to feed herself independently.  He said "Call her back and tell her we'll be there."
To be continued...


  1. I can't wait to read more! It is so interesting & enlightening to see this side of raising a child with DS. You and Travis both seem to be incredible parents. I got teary eyed when I read "call her back and tell her we'll be there" - that drop everything you're doing to assist your child attitude is so amazing (clearly I don't have children because maybe I wouldn't be so awe-struck by this attitude). But, really, thank you for sharing every side of your story with us - from the fun things to these not-so-fun things!

  2. Our struggle with tube feeding is in month 16. Since birth Max has had a tube an ng first then a g tube. We are weaning him off and it seems to be going well, he has hungry cues and the drive to eat. But I totally understand the heartbreak that struggling o feed your child can cause! I'm excited o hear more!

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  4. Wow. Really excited to read more about this. My 3 1/2 year old (with DS, adopted from H*ng Kong a year ago) is completely g-tube dependent and has been since she was a tiny baby (well, actually had an ng tube then, but nothing by mouth that I know of starting very young). I have been more concerned with attachment and getting her healthy the first year, but now she is healthier and attachment is progressing well, so it is time to explore feeding options. She is SOOOO stubborn that I am just not confident in any technique really. I will be interested to follow your journey. Thank you!!! I love your blog and have for a couple of years!

  5. This post helps me understand you to a whole new level. First- your dedication, patience, and love through this extremely frustrating process is an inspiration. Second- while we also have a g-tube history, it is only a scratch on the surface of what you've been dealing with, and I have so much respect for how you have handled this. I am so glad you are writing about your g-tube experiences. I know this will help so many people.

  6. Thank you so much for writing about this. We are struggling to get our son off of his ng tube, and so many people are so nonchalant and say "he can just go on a g-tube". I really want to do everything we can to avoid that. Your dedication is inspiring.