Matthew did very well on the Poopinator for a time. Then slowly it stopped working and he began backing up again. We had to put him back on Miralax, added Lactulose, Senna Plus, Enemeez and eventually the Peristeen pump. Each addition brought some relief for a time but then stopped working. He ended up back in the hospital for yet another clean out in October and to complete some much needed testing. After a Sitz Marker Study, we came to the conclusion that there was no specific areas of colonic inertia . His infectious Disease doctor highly suspects the backing up of his bowels was the cause of the g-tube stoma infection and the GI doctors are suggesting an Apendicostomy.
So here we are caught between a rock and a hard place. Matt eats most of his blends by mouth but gets meds, extra water, the Poopinator and an overnight feeding of green smoothie. Because of issues with his immune system, having an Appendicostomy done most likely would increase his chances of infection. On the other hand, after 16 years of major GI issues, I can’t see how I could maintain his nutrition and medication regimen without the g-tube.
So now I am on a mission. Delay or completely avoid another surgery. He has been drinking a blend throughout the day that contains hemp milk and it seems to bring him some relief. Then it came to me: Why not give him a straight shot of it with The Poopinator? It might have a better effect that way.
4oz of the original recipe or any combination of the foods listed in The Poopinator
Directions: Warm the Poopinator THEN add the hemp milk or kefir. I have found that warming the Poopinator Plus in the microwave causes the hemp milk to clump. That can cause an extension tube to clog. I have also noted that heating hemp milk in a recipe causes it to thicken. Also, if you are using kefir, you will want to add it after the mixture has been warmed to avoid killing off the good bacteria. Give as a bolus at the fastest rate that is tolerated. Flush with at least 10cc of water. If the volume is too high, reduce the solids before reducing the hemp milk until a tolerable volume is reached.
Please remember this: Medication and/or surgical intervention is not a failure on your part (somehow I think I’m talking to myself here). The goal is to do whatever it takes to give our loved one(s) the best quality of life possible. Blended whole foods is by far the best choice over formulas but sometimes it’s just not enough. Hang in there and don’t quit!
Ok it’s been a while since I been able to add a new recipe so here goes. I’m dedicating this to 2 young tubie warriors. This ones for you, kiddos!
Three years ago, right before Matt had his hip surgery, his digestive tract started giving him problems again. I was trying to avoid putting him on laxatives so I developed a green smoothie that I had hoped would help him. I originally put fruit in it and offered it to him to drink. He liked it (sort of) but he only drank 2oz. I knew that was not enough to work so I went back to the drawing board. Then it dawned on me. He has a g-tube! He doesn’t need to drink it so I can remove the fruit and add more greens! It worked. The added greens allowed me to add more fiber without fighting with him about the taste. Now when I give him a bolus feeding or hang his bag for his night feeding he smiles and says, “Ooh! Mooie! Yup. You got it. That’s where the name came from.
Since each child and adult that are g-tube dependent have different issues, I caution you to check with your doctor before changing a feeding regimen and, if you get the ok to to try this, add small amounts at first and watch for adverse effects. I do not recommend making this smoothie with anything else but a Vitamix. The Vitamix blends the greens so finely that there are little or no leave particles to get caught in the filter of the feeding bag. If the filter gets clogged that feeding stops and the alarm goes off. It’s less of a problem for bolus feeding but, if there is difficulty in breaking down solids, it could cause issues. All of the ingredients are added to the Vitamix container by weight. That way there is no measuring so it comes out the same every time. It also makes for a quicker blend. Just put the Vitamix container on a food scale and add the ingredients. No more measuring cups and spoons to wash.
3oz + 5oz of peppermint or chamomile tea
6oz of greens (your choice)
2oz of fresh Aloe Vera gel (optional)
3oz avocado (or 2oz of avocado + 4 tsp of organic olive oil)
Turn the machine on and increase the speed to Variable 6 and blend for 10-20 seconds or until all the ingredients are combined.
Makes 2 14oz smoothies. Matthew’s night feeding is 500mls so I rinse the container with enough filtered water and add it to the feeding bag to ensure he gets the full dose. I have also added 1 tsp of fresh pureed ginger when Matthew’s stomach was more upset than usual. Feel free to experiment with different greens. Sometimes I will buy the large bag of Power greens or spinach from Costco along with Romaine lettuce hearts. I also keep a close eye on the local farmer’s market for greens that are on sale. Parsley is great because it helps settle the stomach.
ATTENTION: Make sure to get clearance from your doctor before trying any blenderized diet.
1 cup of peppermint or chamomile tea
2 oz of Avocado
2 oz of fresh Aloe Vera (optional)
3 cups of greens
Makes 2 cups
1. Place all ingredients into the Vitamix in the order listed and secure lid.
2. Select Variable 1.
3. Turn machine on and quickly increase speed to 10, then to High.
Blend for 1-2 minutes or until very smooth (no visible leaves).
Food Tip: When using this smoothie in the enteral feeding pump, it is vital that there are no leaf particles. Because the bag tubing, extension tubing and g-tube are all small in diameter, small bits of leaves can get caught and cause the pump to alarm and stop the feeding due to “No flow out”. Green smoothies do not work well without some type of fat in them. Outside of the health benefits, that’s why the avocado is added.Also, if formula is normally given, it is best to combine the smoothie with the formula and mix well. It has been my experience that straight green smoothies without the formula mixed in tend to separate. The pureed greens are lighter than the water so the water will go though the pump leaving the greens stuck in the feed bag. If Aloe Vera is used it must be food grade. Do not use fresh Aloe Vera unless you know how to properly prepare it.
Time Tip: How much smoothie to give depends on total volume and tolerance. It is best fresh within 2-3 days so I store the remaining smoothie in a container that allows me to shake it up before pouring.
Money Tip: Since they are going to be blended, buy greens in bulk and freeze any portion you do not use within 3-5 days. That way there is no waste from greens gone bad in the refrigerator. Fresh frozen greens such as kale and spinach break up easily once frozen allowing for easy measuring and blending.
Placed all into the Vitamix container in the order listed and secure lid.
Select Variable 1.
Turn machine on and quickly increase speed to Variable 10, then to High.
Blend for 1 minute or until desired consistency is reached. Use the tamper if needed to push the ingredients into the blades.
Food Tip: Any of your favorite greens will work in this smoothie. Spinach and romaine lettuce are good starters for the novice green smoothie drinker because the fruit masks the taste of the greens. As you get more accustomed to the taste, try removing the Stevia and some of the fruit. That will retrain your palate into not always needing food to be sweet to taste good.
Time Tip: As with my other smoothie recipes, I save time by pureeing the fruit and freezing them in ice cube trays. No need to separate large chunks of frozen fruit. Also, I can add exactly the desired amount of fruit keeping the flavor just like I like it or give me option to change it up a bit.
Money Tip: Buy your greens at a food warehouse such as Costco or Sam’s Club. As soon as you open the bags, fill gallon-sized freezer bags, label and date them, then put them straight into the freezer. Use up the fresh greens in the refrigerator then begin using the frozen greens. No more tossing half of your greens in the trash 3 days after you bring the home and running out to by more. No waste ALWAYS means more money in your pocket.
It’s been very busy here at the Barton home lately. Shortly after starting this blog we found out that Matthew needed major hip surgery. I was a bit overwhelmed by the news because the x-rays from the prior visit with the orthopedic surgeon looked great. On top of all the digestive tract problems, Matt also suffers from bilateral hip displaysia. That means that both of his hips dislocate. Because of their loose ligaments, kids with Down Syndrome are prone to it. We found out when he was 4 and he wore a brace for 8 years hoping it would correct the problem without surgery.
The brace did work on the right but his left hip continued to dislocate. So, at the end of December, Matt had his surgery. Unfortunately he was back in the hospital 1 week later with an infection in his hip because of his weak immune system. Now after 3 months in 3 different casts
and 2 months in a new brace, he is walking on his own without the help of the brace or walker!
Now if that weren’t enough, 3 months before the surgery, he began having major problems related to his Hirschsprung’s disease. In my next post, I will talk about what happened and share my green smoothie recipe that worked where Mira lax failed. Stay tuned!