Emergency Kit

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One of my fellow tubie moms thought it would be a good idea to write a post on emergency preparedness for tubies.  Keeping your freezer stocked with a 30 day supply of blends is beneficial in the event of a power outage but, that won’t help if you are evacuated from your home in an emergency.

This bag is under Matt’s bed.  I equate it to a “diaper” bag on steroids.  Because he has night nursing, it is a requirement but I think everyone should have one in case of an emergency.  If there is an emergency, we can grab Matt and the bag at a moments notice.  This would in addition to the disaster supply kit you have (or should have) for your family.  Typically the kits are set up for 72 hours.  The bag should be restocked after every use or at least once a year.  Here is a list of the supplies I keep ready for our son:

  1. Formula-Even though your child may normally get whole food blends at home, That may not be practical in the event of a disaster.  It is good to keep some of the formula that he/she can tolerate for emergency purposes.  Make sure to include a cup (for oral feeders) and a mixing jug in case you dilute it.
  2. Water-Think about how much free water your child gets or drinks in a day then multiply by 3.
  3. Syringes, extension tubes and bolus feeders-The Mic-Key button comes with an extra extension tube for pump feedings and a bolus tube and syringe.  Even if you don’t use the bolus feeding tube, save them and pack them in the emergency bag.
  4. Medication-The pharmacy will supply you with small bottles extra “emergency” medication if you ask them.  We are required to give the school a 72 hour supply of all medication so I ask the pharmacy for additional bottles for the emergency bag.
  5. Exam gloves, hand sanitizer, wet and/or baby wipes-These make clean ups much easier if you are not near running water.
  6. Surgical masks-Many of our children have poor or compromised immune systems.  You can use the masks if you find yourself confined with others who might be sick.
  7. Dressing change supplies-Even if you normally use the reusable type, having some sterile 2×2 drain sponges and paper tape on hand can be a lifesaver.
  8. Diapers, pull-ups and disposable under pads (chucks)-The under pads make perfect changing pads.  If they get soiled, just toss them.  Also toss in some plastic grocery bags for when disposing of diapers and pull ups isn’t convenient.
  9. A change of clothes-Try to keep a light jacket, blanket and seasonal clothes in the bag.
  10. Finger food-If your child is an oral eater, keep a sealed package of his/her favorite snack.
  11. Lovey/soother-No matter what the age of your child, emergencies/disasters are scary.  Keep something in the bag that can distract and calm them.

Raw Coconut Milk

  • Servings: 8
  • Difficulty: easy
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coconut-milk-2

When I was a little girl growing up in Massachusetts, one of my favorite memories was making coconut beans and rice with my grandma. It was an old family recipe from Jamaica that was made during the holidays. When we were making it, the wonderfully sweet smell of fresh coconut filled the house. I can remember sitting at the kitchen table with a cheese grater grating the coconut meat by hand and placing it on cheese cloth. I can also remember the stern look I got from her when she caught me sneaking a piece to nibble on. It was my dad’s job to “milk” the coconut. The cheese cloth containing the shredded coconut was tied and placed in a pot of boiling water for 20 minutes then squeezed and measured. My dad was the only one tough enough to handle the job. All of this took lots of time but the final dish was like no other. It was a labor of love so we didn’t mind.

Fast forward to the present. Because of the Vitamix, I can make fresh coconut milk in a fraction of the time, no scraped knuckles from the grater, with less mess and nary a burn from scalding water.

Ingredients

Prepare fresh coconut

6oz fresh coconut meat

4 cups of water (total)


Directions

  1. Place coconut meat into the container and secure lid.
  2. Select Variable 1.
  3. Turn machine on and quickly increase speed to Variable 10, then High.
  4. Blend for 30 seconds or until a fine mash is formed using the tamper to press the coconut meat into the blades.
  5. Turn machine off, remove lid, scrape container with a Vitamix spatula, add 2 cups of the water and replace the lid.
  6. Select Variable 1.
  7. Turn machine on and quickly increase speed to Variable 10, then to High.
  8. Blend for 1 minute then pour contents into a Vitamix filtration bag to extract the milk.
  9. Return the mash in the filtration bag to the Vitamix container and add the remaining 2 cups of water.
  10. Repeat steps 6-8.

Food Tip: Save the coconut water extracted prior to removing the meat from the shell to drink separately.  Coconut milk is VERY high in fat calories so watch how much you drink (about 256 calories per 4oz serving). It is an excellent way to boost the calories in a blenderized or pureed diet for people with volume intolerance. Raw coconut milk will only stay fresh in the refrigerator for 4-5 days so freeze any unused milk and/or coconut water in ice-cube trays and store in dated labeled freezer bags. Always test for allergies by giving a small amount (1-2 tsp) over the course of 4-7 days.

Time Tip: Coconuts typically contain 12-14 oz of meat. Freeze any unused meat in a dated and labeled freezer bag for future use.

Money tip: Coconuts are less expensive during the holidays so stock up, process and save.

For more information on picking and processing fresh coconuts, please see my blog post on that topic.

Coconut Milk/Pros and Cons

As Matthew grows it gets harder and harder to keep up with his calorie need without adding more formula.  To complicate things more, in the last 2 years, his bowel has begun functioning much less efficient.  Because of that I tested him for 4 days with coconut oil to make sure he wasn’t allergic to it.  Once I saw that he was not allergic to it, I began making his oatmeal with fresh coconut milk I blend myself.  Since I had already done research on it, I felt comfortable giving it to him.  I will post that recipe and my recipe for coconut seed pudding soon.

Since there is a lot of confusion about the health benefits of it, I thought it would be good to pass on what I have read.  I feel strongly in educating myself on anything I eat but much more so for Matthew.  So many of us race off after every new “super food” that hits the news without looking into the particulars of it.  I tend to look for articles done with research behind them and, because of my medical background, articles written by MDs.  I know there are many doctors who are anti whole food healing but not all of them are.

I read this article about coconut milk and I felt it gave a good picture of the pros and cons of it.  Take a look and decide for yourself.

 

Basic Blend

This is one of those “what we had for dinner” blends.  The picture and the recipe are spoon thick because it can just as easy be used for someone on a pureed diet.  To make it thinner for bolus or pump feeding, just add more turkey stock or bone broth if you happen to have some.  You may notice that the stock is green.  That’s because I blended the meal right after I had made a green smoothie.  By not washing out the container, I saved time and water.  Plus all of the extra nutrients from the green smoothie are now in the dinner blend!

1/2 cup of turkey or chicken stock

2 cups steamed or raw broccoli

1/2 cup brown rice

6oz (approx. 1 cup) cooked turkey or chicken

  1. Place all ingredients in the container in the order listed and secure lid.
  2. Select Variable 1.
  3. Turn machine on and quickly increase speed to variable 10, then to High.
  4. Blend for 1 minute, using the tamper to press the ingredients into the blades.

Food tip: This recipe is great for starting out.  None of the ingredients are commonly associated with food allergies.  Raw broccoli is a little harder to digest so, if the blend causes gas, steam the broccoli first.

Time Tip: If you are blending for a little one, freeze the blend in ice cube trays for quick easy 1 oz portions.  Depending on the caloric need, use batch blending and store in feeding specific quantities.

Money Tip:  Buying meat on sale is the best way to save money. For example, I buy an extra turkey during Thanksgiving and keep it in the freezer.  I cook it up some time later as a Sunday dinner, turn some of the leftovers into turkey enchiladas and setting aside at least a cup for blending.  Then I boil the carcass to make a a quick turkey stock or, if I have time, turkey bone broth.  Also, buy broccoli in bulk at a club store.  Use as much fresh as you can eat in 4 days and steam the remainder before freezing in 1-2 cup portions for later use.

 

 

Just Keep Swimming

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Matthew at 3 watching “Finding Nemo”

What do you do when you’ve done all that you can and your tubie needs a clean out anyway? All of the blending and adding and removing and…SO MUCH GREEN STUFF! Well… You just keep swimming, right? That’s what Dori did. Yes, finding Nemo is one of Matt’s favorite movies to this day even though He’s now 15. So amid the overwhelming feeling of defeat,exhaustion worry and fear I hear that song ringing in my head. Oh how I wish it were that easy. Matt has had GI troubles since he was 8 months old. I’ve been at this for 15 years. Shouldn’t I be use to the ups and downs of this tubie roller coaster by now?

But, as we all know, that is not the case. Putting up with the pain and discomfort or watching someone you love go through it is never easy.  So whether you are a tubie yourself or the caregiver of a tubie, a newbie tubie or a veteran tubie, please know that you are not alone. Find a support group if you are not in one already. They are indispensable! Where else can you go and talk about poop and vomit as if it were the weather. We get each other. No need to explain, defend or excuse. Just take a breath and…You guessed it! JUST KEEP SWIMMING!

Nooooo!

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So what do you think happened here?  Was it:

  1. The baby threw up.
  2. The syringe malfunctioned.
  3. The med port popped open.

If you guessed #2, you were right.  Sticky syringes can be annoying if not down right disastrous.  Has it happened to you or is it just me and the mom of this baby?  I have had to clean walls, ceilings and floors because I forced a syringe filled with medication or oils.  You know the drill.  You use a syringe, wash it, let it dry and forget about it until it’s time to reload it.  When bolus feeding a blenderized diet it can cause a sticky syringe within in 1 to 2 uses.  We all know tossing our syringes after so few uses is out of the question. You have to use those syringes 5-6 times a day minimum for up to a week so what do you do?  The answer:  Lubricate the plunger.

I use coconut oil for 2 reasons: 1) It was recommended to me by another Tubie mom and 2) when I used olive oil it still got stuck.  So here’s the process:

  1. Starting with a dry syringe and plunder, dip the plunder into a bowl containing slightly warm coconut oil.
  2. Make sure to coat all surfaces of the plunger.
  3. Insert the plunger into the syringe and move the plunger up and down inside the syringe several times while turning the plunder.
  4. For the 60cc syringe, I sometimes use my finger to lubricate the inside in addition to the plunger.  This is helpful if the blend is fairly thick or the syringe has been reused a number of times.

Now you are ready to load your feeding.  It is very important to give the feeding immediately after loading it. It has been my experience that, if you set the syringe down and come back to it, the plunger will be stuck.  And what happens when you have a syringe full of a blend and you try to force into the extension tube?  Refer to picture 1.

If you are feeding on the go, I suggest you carry the coconut oil with you in a small vial.20170130_091230  It is solid at and below room temperature so you will want to keep it somewhere that is fairly warm.  If you can’t do that, you can still use it on the plunder but you have to do step #3 until the friction in the syringe melts it.

I would love to hear what works for you.  Please leave a comment.  The more information we have the fewer, “Nooooo!” situations we will have.

Pureed Fresh Ginger

  • Difficulty: easy
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Time to toss the grater, folks!  This is the fastest and easiest way to process ginger.

Ingredients


3 cups of fresh ginger root

Directions

  1. Wash (no need to peel) and cut 2-3 cups of fresh ginger root.
  2. Place into Vitamix container and secure lid.
  3. Select Variable 1 and turn machine on.
  4. Quickly increase speed to variable 10, then High.
  5. Using the tamper, press the ginger into the blades and blend for 1-2 minutes or until completely smooth.

Food Tip:  As most of us know, ginger root makes an excellent tea and seasoning for a wide variety of dishes.  When using it in tea, make sure to stir occasionally.  Mixed in, the particles go unnoticed. But, if you leave it sitting and then drink it, you will find that the particles settle to the bottom making your last sip pretty grainy.

Time Tip: Freeze ginger puree in “mini cube” ice cube trays and store them in labeled freezer bags.  Each cube is about 1/2 teaspoon so there no guessing when it comes to measurements.  Don’t bother peeling it.  The Vitamix is powerful enough to blend the root and the skin so smooth that there are no fibrous strands in the puree.  Plan ahead and keep some on hand in the refrigerator for easy mixing.

Money Tip:  I looked up Ginger puree on line and it was going for $9 a pound.  Fresh ginger root runs about $6-7 .  Because of its strong flavor, only a small amount is needed.  Keeping it in the freezer means less waste in the refrigerator and the convenient cubes are ready when you are.

Baby Steps

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!

Matthew’s Green Smoothie

ATTENTION: Make sure to get clearance from your doctor before trying any blenderized diet.

My Helper
My Helper

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

Bolus Feeding Syringe
Bolus Feeding Syringe

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).

Night Feeding Via Pump
Night Feeding Via Pump

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.