Do not make this mistake
In this post, I share our family’s challenging experience of leaving the hospital with our daughter, Averley, who had been fitted with an NG tube due to failure to thrive. What was meant to be a one-night stay turned into a week of tests, training, and unexpected complications. After being discharged late on a Friday without a proper follow-up plan, we faced a whirlwind of challenges, including the removal of her tube with no local support available. This blog offers practical advice for parents in similar situations, particularly those living in regional areas with limited medical services. Key takeaways include making sure a support plan is in place, confirming follow-up care, and ensuring hospital staff know if medical services are difficult to access locally
10/10/20242 min read
Avoid This Mistake When Leaving Hospital with an NG Tube Baby
Obviously, you're always keen to leave the hospital and get back to your own bed, your own food, and your own family. But let me share a hard-learned lesson—don’t make this mistake.
We entered the hospital on a Monday afternoon after setting up several alternate plans for our other children, ensuring that Averley would have me by her side, and coordinating with my husband’s work. I expected a quick one-night stay to get fitted for Averley’s NG tube. The diagnosis of failure to thrive seemed straightforward—feed her more, and she’ll grow. Little did I know, I was in for a much longer and more complex stay.
We didn’t see the doctors that evening, but I was eager to gather as much information as possible. The nurses monitored everything—her wet nappies, weight before and after feeds—and we charted everything. Settling in for the night, I watched the other children’s buzzers and alarms going off, not realising that this was just the beginning for us.
By Wednesday, Averley was fitted with her NG tube, but there were more tests, more assessments, and more lessons on how to manage her feeds. Specialists and allied health professionals monitored her progress, and by Friday, I was ready to head home with a bag full of supplies. But we made a big mistake: we left without a proper support plan.
On Saturday, I received a call from the discharge nurse. Initially, I thought it was a courtesy call, but she told me there would be no follow-up nurse visits due to staff shortages. She added, "You’ll be right, won’t you?" I had no choice but to say, "Well, I’ll have to be."
Things seemed manageable until Monday morning when, in a split second, Averley pulled her tube out. I was alone, unprepared, and quickly realised none of the local services could help. After calling around, I was finally told to take her to the Children’s Hospital, where their Enteral Feeding Team saw us immediately.
The team was shocked we had been discharged without proper support and trained me to reinsert the NG tube myself within 30 minutes. I later learned that discharging a patient late on a Friday with no follow-up plan is a known risk—one we fell victim to.
If you ever find yourself in a similar position, here are my tips:
Ensure the support plan is documented – Don’t leave without a written plan.
Get a contact person and number – Know who to reach in an emergency.
Confirm follow-up appointments – Make sure they’re scheduled before you leave.
Be clear about your situation – If you don’t have access to medical services locally, tell the hospital staff.
Living in a regional area with limited medical services, it’s easy to fall through the cracks. But with the right preparation, you can avoid this stressful situation.