As a mother of a medically fragile child, I showed my support, made all the appointments, packed up my bags and had hospital overnights (both planned and unplanned) and practiced more patience than I thought possible. My husband and I did the 'divide and conquer' with being at home with our other son and being there for every need of our tubie. I kept my tubie and his belly clean and cared for. One thing that I was not prepared for, however, was switching out his g tube button.
Arlo has had his G-tube his whole life (almost two years) and I guess you could say we lucked out in the beginning. Since he had so many procedures and appointments, doctors were always checking on his button and switching it out when it was needed. Eventually, the hospital visits became less frequent in addition to my son growing up and become a squirmy toddler. I felt very defeated when it came to switching out his AMT miniONE button. He would cry, roll, squirm, the button wouldn’t go in, etc. The list goes on. Over time, I’ve gained the confidence with doing this but after collaborating with Dawn from Dose of Play, I've learned she has some AMAZING tips to help this process.
Dawn is a Certified Child Life Specialist and has mastered the art of distraction, play, and confidence as a means to ease the minds of little ones. For example, did you know that children are less irritable and more calm and comfortable when they’re propped up or elevated slightly? Try this out while doing your child’s next button change!
Today, in partnership with @doseofplay, I’m laying out some strategies to help support you when your child’s G-tube comes out whether routinely or unexpectedly! Important: If your child’s G-tube comes out for the first time within the first 3 months of placement, please contact your medical provider immediately or go to the emergency room. The following list of strategies is not to be considered medical advice. It is intended to help reduce stress associated with changing a young child’s G-tube only if you have been given clearance and proper training and education from your child’s medical team. By continuing to read this post, you are in agreement to the terms of service and disclosure set forth by @doseofplay and @littlebirchshop.
Be prepared. Keep all items needed for the G-tube button change on a tray. Open all wrappers and packaging ahead of time. Examples would include opening gauze and lubricants ahead of time so your hands are free for your tubie. Keep an instructional cheat sheet with your supplies to help stay calm and confident as you go through the steps to change/remedy the unexpected G-tube pull.
Practice on a Doll. While they taught you how to do the dressing change in the hospital or clinic, practicing your technique will improve efficiency reducing time while not compromising safety is key with a squirmy little one. It can help you tackle that surprise factor-induced stress.
- Store supplies and special distraction items together in a central location. Keep reading for an easy DIY idea for that special distraction.
While I’m on the subject of items for the little.. if he/she wants to grab items that will be in your hand such as a syringe or wrapper, have an extra one he/she can play with available and within reach. Keep it saved away in your supplies. I've colored the inside of our extra syringes using permanent marker, which will help ensure you don’t mix up sterile ones.
Try to stay Calm, Playful and Confident - sing to yourself “you down with “C.P.C.”, yeah you know me?!” ;) Is it silly? Yes. Double bonus - little ones LOVE a silly caregiver (another distraction too!) Being confident is a huge key in this tip as young children tend to easily pick up on fear or uncertainty. I always think of how I act or react if a child gets hurt. Sometimes making a situation into something bigger than it really is can be scary for the child. Even if you’re feeling scared switching out a G-tube button, try not to let your child see that. This is where acting silly comes in handy both for you and them.
- Another distraction tip is to use your voice or mouth to make silly unexpected sounds and expressions that keep them entertained for added seconds. Squirmy little ones are also most likely in the phase of “monkey see, monkey do” and will copy whatever they hear.
Distract little one with something enticing to pull at other than his tube: **Bedazzle an old sock with items for the child to pull at. Items attached will be things that you don’t have to worry about baby choking on so you can focus at the task at hand. Test out its efficacy during a diaper change: If your little one doesn’t go for an item, switch it out to match his interests and then hide it away so it stays interesting when the time comes!
The key to using these tips during a g tube button change is to use items that don’t require your hands. Other fun distraction items may include teething necklaces or large colorful necklaces, a silly hat, bendy/stretchy straws, spiral key bracelets, chunky ribbons, cards, a syringe, noisemakers, kazoos, etc.
To gain confidence, start by choosing one or two items from this list of ideas to help distract your little one. Try adding one or two more ideas with each button change (every 6-8 weeks or when needed) and you and your little one will seem to be part of a team. Keep up the good work and best of luck!
Thank you to Dawn for your expertise and creativity! For more ideas on coping, distractions, play, and more, be sure to check out @doseofplay and www.doseofplay.com.