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. 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. 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!
One of the most rewarding parts of being a tubie parent is being able to help others along on the journey. Raiden’s mom and I connected through a group online and now I get to watch him thrive on…You guessed it. Real food. Just look at that smile! I don’t know about you but I think he’s saying, “Thanks, Mom!”
Getting started can be scary and overwhelming. Just remind yourself that, barring any dietary restrictions, tubies are real people who need real food. Think to yourself, if my son, daughter or family member could take in 100% of what their body needs to thrive orally, what would they eat? If the person was able to eat before the tube was placed, what did they like to eat? That is always a good place to start. If your tubie is a baby just starting out, introduce 1 food at a time just as you would any baby, paying special attention to possible allergic reactions. There is also a hidden benefit to the tube. Tubies often get a more balanced diet because you don’t have to battle their taste buds.
Now, the title of this post is Raiden’s Breakfast Blend so let’s get to it.
1/2 cup of old fashion or quick oats
1 cup of Fairlife whole milk
1 cooked scrambled egg
Combine oats and milk and cook according to the directions on the package. Cook the scrambled egg and set aside. Cut apple into quarters and remove the seeds. DO NOT PEEL.
Place apple oatmeal and egg into the Vitamix container (in that order) and secure lid.
Turn machine on and quickly increase speed to Variable 10, the to High.
Blend for 1 minute or until completely smooth.
This blend is about 300 calories. If the blend is too thick, water can be added to reach the desired consistency. Thinner blends can have lots of bubbles so it’s best to let it sit a while before giving it as a bolus feeding.
Hands up. Eyes closed. Twisting at the waist as if the top half of him was actually a washing machine agitator. Sunday morning worship is extra special when Matt is with us. Sometimes I just watch others watching him and smile. Other times I think “If they only knew what it takes on a daily basis to get him ready to go anywhere or how much pain he has experienced in the 15 years he has blessed us with his presence. Some would say, “Well, he doesn’t know any better.” I beg to differ. He may not understand it (neither do I for that matter) but he feels it. He doesn’t like it (see above picture) but he chooses not to let his circumstances steal his joy. Oh, if I could only live life the way he does-To be that strong. I think I would have checked out long ago. What joy he brings to others. I truly believe that is his calling. “Matthew” means “Gift from God” but it might as well mean “Acceptance with Joy”. But, as his mom, it is times like this that break my heart.
Another PICC line. Another g-tube stoma infection that won’t clear. Another round of IV antibiotics. A bowel that stops working no matter what I do with his diet. More unanswered questions. More decisions to make for him. Decisions that undoubtedly will involve more pain and more time away from home and school. I try not to question God but sometimes it’s hard. It’s hard when he’s in the hospital and is asking at least every 30 minutes to go home. Or, every weekday when he says, “Mom. Go school?” and I have to say “I’m sorry. Not today. You can’t go to school with a PICC line.”
I have read that, 90% of in utero diagnoses of Down Syndrome end in abortion. Some would use cases like Matthew’s as justification. Not everyone with Down Syndrome struggles with such complicated medical conditions. Many live long, happy and even independent lives. When Steve and I said no to the amniocentesis, we said “yes” to whatever God had in store for us as a family. I liken it to standing at the alter on your wedding day. You stand before God and man and make a vow “til death do us part”. Why? Because we have no idea what lies ahead. God doesn’t give us a crystal ball on our wedding day. If He did, many of us would never marry. And so it is with our children. Some come into the world healthy and stay healthy. Some come in healthy and get very sick or become disabled in some way.
So what do we do? Just as we would for any sick or injured spouse or child. We rise each day, ask God for renewed strength and deal with what’s in front of us. If Matt can take it, we can make it.
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 green 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. This is the one that worked for Matt:
1 Cup of peppermint or chamomile tea
2 Tablespoons Organic apple cider vinegar
1oz fresh Aloe Vera (optional)
3 Cups packed greens (your choice)
4 tsp organic olive oil
1/4 cup fresh basil leaves
Makes 2 8oz smoothies. 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.
Yes, even veteran tubie moms can struggle from time to time. Matthew can’t handle large volumes because of his slow emptying issues. He is a growing teenage boy who is now more active than he’s ever been in his life. It has been quite a challenge getting him the additional calories he needs without increasing volume. Recently I had to add another carton of formula to his daily routing because his weight was dropping. I have been hesitant to try coconut oil and/or milk because of extreme food allergies in the family. For years I have been making his oatmeal with formula. Helping a transitioning little one has given me the courage to try adding 1/2 tsp of organic coconut oil in his immune system cocktail (given through the g-tube) to see how he reacts. It’s been 2 days and so far so good. If he continues to show no allergic reaction I will make his next batch with fresh coconut milk instead!
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.