“After today, we won’t need to worry about how to get fluids in you” we said to my little man as we tried nearly in vain to inject one 5ml syringe of water into his mouth at a time. “you need to drink lots for your surgery. We’re going to put a special tube in your tummy so we can put the water straight down there and then you won’t have to do this.” Truely it has been so very difficult to get my son to drink anything at all. He drinks around 500ml a day of a special kids formula, and that’s it. No water, no solids. That’s his entire nutrient and hydration input. For all guesses he should be malnourished by now, but somehow, by the grace of God, he’s still fighting on and still looking relatively healthy – if not a little thin.

PEG stands for percutaneous endoscopic gastrostomy, a procedure in which a flexible feeding tube is placed through the abdominal wall and into the stomach. PEG allows nutrition, fluids and/or medications to be put directly into the stomach, bypassing the mouth and esophagus.

We’ve been waiting for this surgery for over a year now, having been pushed back multiple times by waves of COVID infections shutting down elective surgeries in hospitals. Partly that’s because we’ve gone with the public health system because of our belief in such things, but honestly I don’t think we could have gained much in this instance by going private. As I write this, I’m sitting in the waiting room in The Children’s Hospital at Westmead, passing the time while his mother accompanies him for the last bit of prep before the surgery. It’s a quick procedure and older kids and adults go home the same day, but he’ll be here under observation for a few days while he heals up.

We’re very excited about this change because it means that we can always give him the nutrition that he needs, even when he’s unable to cope with eating it orally, but also it means independence from the very specific brand of formula that’s the only thing that he will drink and, coincidentally the only thing that will meed his needs. With the tube we have the option to blend real food super smooth and feed that to him instead. Some dieticians in this country are concerned that you can’t guarantee your own cooking will give him all the nutrients that he needs, but that isn’t really any different from feeding our other two kids. On a rare occasion they’ve been known to survive solely on chocolate cereal and chicken nuggets, but on the whole we manage to feed them a nutritious diet – so why not apply the same effort to blended food.

As I round out this blog post, his procedure has been completed successfully and now we’re just waiting on him waking up and beginning his recovery.