The following is a guest post written by mom and QPAM community member, Mandie H. A lot of her experience is with gastrostomy tubes (aka g-tubes) but her tips can be applied to all kinds of feeding tubes.
If you’d like to know more about feeding tubes, check out this incredible guide that’s full of useful information for parents and caregivers!
I still remember, it was eight years ago…
We struggled with feeding by mouth. It seemed the more we tried, the harder it was for my son. We thickened his formula so much that he could no longer tolerate the volume, he threw up continuously, and it seemed like every other week we’d end up in the hospital due to aspiration pneumonia.
I felt so lost and defeated. I remember looking at our pediatrician through tears and exhaustion and asking, “Am I hurting my son?”
I was doing him more harm than good by trying to avoid the inevitable.
Feeding tube: two words that no parent even wants to THINK about, let alone come to terms with putting one into their child.
But I’m here to say that it’s not as bad as it sounds; it doesn’t mean defeat, it doesn’t mean the end for your child, and it certainly does NOT mean you failed him or her. In fact it’s just the opposite! When your child goes through as much as my boy did, you’re actually doing your struggling child a world of good. By giving your child a feeding tube you’re doing their struggling little body a favour, eliminating one thing that is causing them harm, and taking one challenge they face and making it a little easier.
To a parent who’s struggling with the possibility of their child getting a feeding tube, this may fall on deaf ears and that’s ok; initially nothing will make that decision easier. But once the procedure is done it gets easier and you just learn a new way of life with your child, not a bad way or end of life as you know it.
It all seems overwhelming when the tube is first placed. It’s all scary and you only have a few days in hospital before you’re sent home to deal with this new way of feeding your child on your own. But really it’s pretty basic and quite easy!
Here are some tips I’ve learned:
- Keep the site clean: it’s as easy as washing your child’s face and hands.
- Just use soap (Ivory Soap works well) and water. Soap is your friend. It’s just that simple! It’s easy to feel like you always need something like saline to clean it, the need to be sterile, but it’s really not needed. Soap cleans just as well, and it’s budget friendly!
- Stay away from using baby wipes! Yes, they’re easy and convenient to just pull out and give a quick wipe but they’re full of chemicals and are very irritating. Wipes can cause a lot of redness and make the site sore and uncomfortable. Instead, I often have a wet wash cloth on hand so I can give a quick wipe (usually after feedings / meds / during a diaper change if it looks a little goopy).
- I follow up with a barrier cream to protect the skin a couple of times a day (I use good ol’ fashioned Vaseline). With all the medicated creams out there with high price tags, people assume they must be better, but don’t underestimate Vaseline. It works great, and again, it’s budget friendly! I also use a barrier cream called Critic-Aid, a Coloplast product, it works AMAZING on the worst of rashes both for g-tube AND diaper. It only takes a small amount to work.
- I also love those cotton pads women use to remove eye make-up, you cut a little slit and they fit perfectly around a g-tube, giving extra protection around the site from leaks.
- Remember to keep rotating the g-tube a couple times a day as well. It’s important for the site.
- One thing I found and didn’t realize sooner is that formula isn’t the only thing that can go through the tube. Your child can still have REAL food! I’ve only NOW just discovered the value in this.
- We tend to suffer from yeast and rashes (the rash that effects the diaper area also effects the g-tube site) due to antibiotics and some other meds my son is on. What tends to help with one issue often has terrible side effects for another area (which is to say, when my son goes on antibiotics they tend to bring on diarrhea, and yeasty rashes soon to follow).
- Due to a severe milk and egg allergy, probiotics are not much of an option, and the lactose-free ones can be very expensive! We only just recently discovered the value of mashing up banana with some coconut oil in the blender with his regular formula. This helps to clear up the diaper and g-tube rash as well as the diarrhea, leaving his tummy much more comfortable! We also use cranberry juice as food blends really well with it without the weight of the formula. Plus it also benefits the kidneys, so win-win!
- This one may sound odd, but sauerkraut is a fabulous source of probiotic! You actually get more out of it than those little capsules. I was really skeptical, but it truly works. A great benefit of a feeding tube is that the child doesn’t have to taste it!
- Everything that goes into a feeding tube has a purpose. Whether it’s medicine or food, it’s all about getting good nutrition and useful calories to help a child grow healthy and strong. There’s no waste, unlike with feeding by mouth where the body just takes what it needs and the rest is “wasted” out. A feeding tube is a good way to optimize food consumption for your child, and it’s actually whole lot easier than you might think. With help from a registered dietician you can work out a proper feeding plan that works best for your family and child, and can always be adjusted as needed.
- When my boy is unwell my biggest concern is hydration. With a feeding tube, even if they’re not tolerating feedings very well while they’re sick, you have the opportunity to slowly flush with water or Pedialyte throughout a 24 hour period. You can even sneak it in while the child sleeps: nighttimes are a golden opportunity here to give some extra water, both when your child is healthy and sick.
- Even though my boy doesn’t eat by mouth, we still try to introduce taste: a little bit of juice on the tongue, something warm, something cold, etc…
“Feeding tube” isn’t a bad word, nor does it mean that your child is regressing. In fact it can mean the opposite: for a child that is severely struggling with feeding issues, which can just add more stress on a child (and creating more challenges and frustrations for you as a parent), you can eliminate one of those struggles and stresses (both for your child and yourself) by going with tube feeds. Your child can better grow, and can still developed and live a very much normal life. It doesn’t put any limits on the “can do’s” for the child; they can still laugh, play and even swim! Yes, swim! Go to the beach, play in the sand, there nothing stopping a child from living a healthy, active life. Only now, you can safely optimize nutrition and help gain some weight at the same time. You child is still eating, and most still even eat by mouth (my son is not included in this) but more for pleasure now and development.
Just remember: with every obstacle or hurdle you have to over come, there are always better days ahead!
Do you have any tips and experiences you’d like to add to Mandie’s? Leave them in the comments section to share with other caregivers like you!
[Featured image: James Stewart]