Littlest Blessing: g-tube

Showing posts with label g-tube. Show all posts

November Progress Report

One of Eric's therapists, Nickie came today. She sees him about every 3 months for evaluation.

Height: 31 inches

Weight: 24.9 pounds

Nickie feels that Eric has caught up for his actual age, not just the adjusted age. He has even advanced in some areas such as fine motor skills. The only concerns now are feeding and speech. Eric should be up to at least 6 words right now. While Eric had learned some words, he has forgotten them. Nickie wasn't too concerned since this is common as a child becomes focused on other tasks. We will have a speech therapist working with us starting soon.

Still not much luck on getting Eric to eat. Doing research, I have discovered that many infants and small children can acquire a feeding tube dependency. Originally, Eric needed the tube for medical reasons, he has GERD and loose stomach muscles. He learned that eating hurt and took a lot of work. (For more information, regarding feeding tube dependency click here.) The more he is on it, the more difficult it becomes to get him off of it. Most adults and older children, who need feeding tubes, do not become dependent because most of them have already established a normal relationship with eating and food. They merely have to relearn to eat, not start back at day one.

So what does Eric eat? A blend of things and probably healthier than most toddlers. A typical schedule looks like this:

Upon waking: 3 oz. Ginger-Chamomile Tea

Half an hour later: 3 oz. Ginger-Chamomile Tea

Wait another 30 minutes: Meal #1 - 5 ounces of goat milk with baby cereal (120 cal)

2 hours later: Meal #2 - 5 ounces BeneVeggie, a combination of BeneCalorie with a pureed veggie (180 cal)

2 hours: 3 ounces of water

Half an hour to 45 minutes later: Meal #3 - 5 oz Pediatric's Compleat - or a real food blended formula (150 cal)

2 hours: 3 ounces of water

Half an hour to 45 minutes later: Meal #4 - 5 ounces of a home-blended meal that adds in new foods to test for allergies (varied)

2 hours: 3 ounces of water

Half an hour to 45 minutes later: Meal #5 - 5 oz BeneVeggie (180 cal)

2 hours: 3 ounces of water

Half an hour to 45 minutes later: Meal #6 - Usually a blend of evaporated milk, formula and cereal. It takes a long time to digest, but is very high in calories at 300 cal for 5 ounces.

Each meal takes about 15 to 30 minutes. Depending on the day, timing of naps, how quickly Eric's stomach digests, and vomiting, we will get most of the calories in. Eric cannot take in too much at a time. Most children his age would be at 8 ounces at a meal. Sometime even a 5 ounce meal can make Eric vomit. If a meal is too high in calories and/or fat, Eric does not digest it well enough. If we go off schedule too much, we skip the water before the meal and add a an ounce or two with the feed. It depends if there is too much residual left over from previous meals. On good days, we can get all of the1000 calories and up to 40 ounces of liquid total. The schedule changes from day to day but the above captures the gist of it.

Cris and I write it on a white board to keep ourselves on track and then he inputs it in the computer later. I blend the formulas right before I go to bed so that they are ready in the morning. It is a team effort and we both do our best to keep it balanced.

Oh, and yes he is officially walking and getting ready to run.

The Homemade Formula Plan

Working with Eric's OT, we are moving to homemade blended formulas. This will help in many ways. We are trying to get Eric used to real food instead of formula and ease the transition for when he is able to take more by mouth. We have noticed that the more real food we put in his g-tube, the more tastes he is willing to try by mouth. He still doesn't want to eat yet, but he is not as adverse to the idea.

The trick with making your own formula is that you have to balance the nutritional and caloric needs with providing enough hydration. Eric isn't able to take too much at a time without throwing up so we are not able to easily feed him the amount that he needs. Right now he needs 1000 calories and 48 oz of fluid. It all has to pass through the feeding tube as well. We also have to try not to trigger the acid reflux. The last attempts caused him to wake up at night screaming from a reflux episode.

Now we are trying to give him most of his calories in the morning and doing a low acid blended formula before naps and bedtime. So far, it seems to be working much better. Another thing that seems to be working is giving him a couple of ounces of Ginger-Chamomile tea before feeding for extra hydration and tummy support.

The more Eric is able to tolerate the new formula blends, the more foods we can add in. I try to make each meal with its own flavor as opposed to making a formula with all of the nutrients in it. It gives Eric a chance to get a taste of different combinations instead of tasting the same thing at every feeding. We are still heavily reliant of the manufactured formula to make sure Eric is still getting what he needs. We will reevaluate that as time and Eric, progress.

So far so good. Eric did lose a teensy bit of weight, but he is also growing taller and walking more. He has become more energetic with the blended formulas and he acts and looks healthier.

Quickie Surgery Update

We are not sure whether or not Eric will be needing another surgery just yet. There will be tests run in another month and we will find out then. Eric may just have weakened it because of all the gagging. He really doesn't throw up as much as he used to. Unless things get really bad, we may just opt out of it. It is a lifetime procedure that affects him his whole life. The GI specialist is on the same wavelength. Surgery is a big deal and it is always best to avoid it if possible.

What we really need to fix is the eating problems. Eric is completely refusing the bottle at this point. We have stopped the pump feeding at night and are working on transitioning him from the feeding tube to oral feeds. It is a tricky process. If you push to much, it increases the aversion. If you don't push at all, it just gets worse. Eric has always been a lazy eater and will not let you know when he is hungry. He has never enjoyed eating because he associates it with the pain of the acid reflux.

We have tried everything possible to get him to eat, different bottles, cereals, veggies, fruits, yogurt, melts, puffs, Cheerios, baby cookies, juice...if it is food, he won't try it. The only thing he will try is water in a sippy cup. Even then, only a couple of sips.

It is just one last hiccup. Not a bad thing considering how wonderfully he is doing in other areas.