Feeding Tube Awareness Week - Day 6 (Resources)

So you find yourself with a feeding tube, or your child has one, what now?

Easy. Educate yourself and get support. I am going to share a few resources with you where you can do just that. (click on the pictures to go to the websites)

The one I have talked about all week will be my first one on the list:

They have a very nice site with TONS of information, support, and just anything you can think of related to feeding tubes. This would be my first stop if I was a new tubie Mom. 

Have a tubie? You are a tubie? You love a tubie? Well, get your tubie a Tubie Friend. This is an awesome program where your tubie will be matched up with a volunteer that will sew the same type of tube your child has into a stuffed animal and send it to them. If you can pay for it, awesome. If not, awesome. Our son has a guinea pig that he named Bolus (good name). He loves Bolus and it really helped him step out of his shell with his tube.

Check out Feeding Tube Awareness's Facebook page for a ton of real life support.

From support group lists to resources and online help, you will like the Oley Fondation's website.

Below are some Facebook Pages for various feeding tube and failure to thrive topics.

• Pediatric Feeding Disorders/FTT/GERD/And Kiddos With Feeding Tubes Facebook Page
• Blenderized Diet
• Blenderized RN

I hope these will help you on your road to being a successful tubie parent. There is a lot of support out there, you just have to reach out for it. 

Feeding Tube Awareness Week - Day 5 (How My Son Feels)

Today I decided that I would share my son's thoughts on his g/gj-tube. A little back story before I get started:

Our son is 10 years old and got his tube 16 months ago. He's your typical little boy. He loves all things Lego, anything to do with robots, Lego, reading Calvin and Hobbes, and did I mention Lego. He has a small thing for Lego. His favorite subject in school is handwriting and he is learning to play the drums.

He also has quite a few medical needs and special needs that prevent him from being able to eat enough calories to sustain his life. 16 months ago his doctors decided it was time to place a feeding tube in the form of a gastrostomy tube.

A gastrostomy tube (also called a G-tube) is a tube inserted through the abdomen that delivers nutrition directly to the stomach. It's one of the ways doctors can make sure kids with trouble eating get the fluid and calories they need to grow. - Kids Health

    A G-J tube is a single tube that passes through the abdominal surface, into the            stomach and down into the second part of the small intestine (the jejunum).  The tube stays in your child's stomach because there is a balloon inflated inside the  stomach to help “hold” it in place.

Below is my interview with him. I had a fun time doing this and I think I might chat with my kids more often for my blog. They seem to have a lot to say.

Our son started with a g-tube. After a while, and for no reason we can figure out, he stopped tolerating his feeds no matter how slow we went. We eventually moved him to a gj-tube. This has a longer tube that goes into the upper portion of the small intestine through the opening between the stomach and small intestine.

G-tube (Top left picture)

Mic-Key GJ-Tube

Now, back to our interview.

Q: Buddy, do you mind if I interview you for my blog for Feeding Tube Awareness Week?
A: Do I get paid? (incredible laughter by my son - you will learn he's quite funny).

Q: How did you feel the day your doctor said you would be getting a feeding tube? Do you remember how they showed us a doll with a tubie in her tummy and let you play with it and learn about it?
A: I was nervous because who wants a hole all the way to their stomach and then put a tube in it? I know I don't. But now I am used to it.

Q: How do you feel now that you have been living with a feeding tube for a while?
A: I just do what I can. I play sports (he's on a team for kids with differing levels of ability), irritate my brother (and with that the question was over because he couldn't stop laughing).

Q: Do you like your feeding tube?
A: Uh huh. It feeds me when I don't feel like eating or can't eat.

He stopped me at this point and said, "Mom, you are forgetting an important question I want to answer."

I asked what that was.

He said, "What did it feel like the first couple of days after I got my tube?"

Q: OK buddy, what DID it feel like the first couple of days after you got your tube?
A: I was kind of nervous and felt like I was going to throw up (we later figured out he was refluxing due to not tolerating his formula and, once we changed, he stopped that). But I didn't want to barf because I was afraid it would hurt.

I also felt important because everyone was sending me presents and flowers and the nurses were all doing things for me. It was fun. (leave it to a kid)

Q: What advice would you give one of your friends who was going to get a feeding tube?
A:  You get used to it.

Q: What is the best part of a feeding tube?
A: The J part of my GJ-Tube is cool. But it's kind of gross that it goes into my ... let's talk about something else. I can eat all the candy because Mom gives me nutritious stuff in my tube. KIDDING MOM!!! (more laughter)

Q: What is the worst part of a feeding tube?
A: Getting it changed. They stick something in the hole in your stomach. (if you can't tell, that just freaks him out when it's the center of attention)

Q: Is there anything else you want to say?
A: Yeah, you should do these more often. I have a lot of things to tell people.

So, there you have it from the horse's mouth. He really is just pretty cool with the whole thing. He hates changes, even when it was a simple G-Tube and we did it at home. Other than that, he's pretty relaxed about it and I think he forgets it's even there. It's just part of our daily lives that he's learned, over the last 16 months, to work with each day.

Took a Chance

Our younger son decided that he wanted to learn to play the piano. (or pinano as he calls it) I called around, found 3 teachers to talk to, chatted with them, and found one we felt would be the best fit. I signed him up and yesterday was his very first lesson.

I will start with the fact that he loves it. Yes, it's day one, but I think he will continue to love it because he's very musically inclined. He is always singing (has since he was old enough to make noise on purpose), loves to listen to any kind of music, has quite a nice collection of music from various genres, and is very interested in musical instruments/making his own music.

But, what is this chance we took? For the first time ever, when putting our kids into something like this, I didn't inform the teacher he had any special needs. I simply signed him up and figured if it came up and the teacher needed to know, we would cross that bridge at that time.

We will see how it goes. I just don't want our sons to be their labels to everyone. I want them to stand on their own merits, let people get to know them and not those letters after their name, and we will deal with what comes. There might come a time when we need to inform people, but most don't need that information. And, on top of that, our children deserve their medical privacy.

I will let you know how it turns out for us.

When Life Gets Hard

"I feel like I am hitting my head against a brick wall". I have heard it many times. I have said it many times. In the Autism journey you can feel like you have not only hit your head into that proverbial wall, but like you have been knocked out more than once.

My advice to you is stop. Stop banging your head for just one minute.

Pull your head away from the wall.

Open your eyes.

Look to your left. Look to your right.

Every wall has a door. Find that door and open it. There's no reason to continue hitting your head when you can turn a door knob and leave that entire room.

We have done this many times. It wasn't until I stopped banging that I found the door to open. It wasn't until I stopped the senseless acts that were causing me so much frustration that I could find the door. It wasn't until I gave it to God through prayer that He gave me enough to strength to stand up and find an exit.

I spoke to my husband who knew someone who was just banging away and banging hard. I told him to tell them this advice. Just stop the ramming and start looking for that door. It's there, find it and see what's on the other side.

Tubie Tips - Backpacks

In the tubie world there are all sorts of backpacks so you can be on the move with a tube feed. We have tried a few of them, OK, quite a few of them, and none have really fit the bill. We tried the packs made specifically for tube feedings such as the Kangaroo Joey backpack line.

Out of all the packs made specifically for feeding tubes, it was my favorite. We use an MOOG Infinity pump, but it works very well in this line of packs.

We also tried so many traditional backpacks tweaking them where needed. Most of the time this meant cutting a hole for the tubing that connects to his extension to exit the bag. Eh, they were alright. Nothing to write home about.

Then, one day, we were at Academy picking up a few things when we walked past the hiking area. They had hydration packs galore and it hit me. This was the perfect backpack for tube feeding. There are a lot of choices out there. But most are the same concept. There's a hydration bag inside (a big feeding tube bag looking thing) that hangs and has a long hose attached that goes out a pre-cut hole, usually it then goes down the pack strap, and comes out so you can drink when you want to. I looked at my options and we chose one by BCG.

I wish I had a big long reason to give you that sounds like I really did my research and had a broad knowledge base on hydration packs. Honestly, it was the least expensive. At $19.99, it was far less than the next lowest priced bag which was a CamelBack at $49.99. I know CamelBak is a much higher quality bag, and I am sure it's worth the price. But this is a very well constructed bag and it's for a kid who isn't out running marathons, hiking for miles at a time, or riding a bike in long distance races. Not to mention, it came in a few cool colors.

Our son chose the orange one you see above. He's a sucker for a bright color.

Inside you will see a tab that has Velcro closure that holds the inner hydration bag. I simply took out the bag and hang our unit there instead. Boom, that's it. The pump fits perfectly in the bottom under the bag as that main pocket is the entire length of the backpack. My hand slips in easily so I can push the run, prime, power, whatever button.

I have it cinched up to the smallest size for my son who weighs about 65lbs. The handle at the top serves to let me hang it off of an IV pole, a hook in our SUV, or anywhere else I need it to hang. There are two pockets on it (one zip and one open) so I can store small things like rolls of tape, tubing caps, extra tubie pads, etc.

My favorite parts of this pack are:

• it's very slim, hugs the body, and isn't bulky. It's the nicest one we have used so far. 
• since it's a hydration pack, there is an opening in the top for tubing to go out and down the straps. This puts the pump tubing in the EXACT spot it needs to be to hook to the extension. 

I think we have finally settled on a set up for when he's on the move. We use it in the house so he can get up and go where he wants and when we are out and about and he needs a feed. 

How I Got Started on This Path - Part 5 (The Final Steps of the Journey)

From here

This is a multi part series. If you would like to start from the beginning, follow these links: Part 1, Part 2, Part 3, Part 4

When we first got our older son's diagnosis of Autism I became a researching fool. I was on the internet, reading books, going over journal publications, and more. I was told PPCD and that was it and knew there HAD to be something else I could do to help our son. I came across parent after parent speaking about something called a DAN doctor and biomedical approaches to helping our kids feel better. I told my husband about it and, while he wasn't sure this was a legit thing, he suggested we go ahead and at least check it out.

I made an appointment with our first DAN doctor and showed up. I was so unprepared. I am used to 10 minutes with a doctor, go home with a pill, see you later. Yeah ... no. I arrived to see a sensory waiting room, a huge fish tank, and an appointment that lasted for 1 1/2 hours. I didn't wait for 1 1/2 hours. The doctor and I talked and went over plans for that period of time. He wanted to do a bunch of labs, not just throw pills at us. What he said made sense. The only thing he sent us away with was MB12 injections. He wrote us a script saying that we needed to wait for all the labs to come back, but our son's symptoms were screaming a B12 issue, so he wanted to get him started on those immediately.

A week later our prescription arrived (it had to be compounded). I sat with my son a long time trying to talk myself into giving him these shots. It wasn't that I doubted the need. It was my own personal freak out about the needles. I bribed him with a treat and we did our first shot. He wasn't too happy but it wasn't horrible, especially once he figured out he got the treat the second it was over. We kept our new treatment to ourselves because I was afraid I would see something out of desire to heal my son and I wanted all those unbiased eyes of friends and family to be my testing ground.

1 1/2 weeks later my being sold on the more natural way of doing things happened. My non-verbal son, my son who went from speech to baby babbling in a day's time, spoke. I will never, ever forget that day. I was sitting in a chair on one side of the room and my son was standing next to the sofa on the other side of the room. It was just a quiet afternoon when he stopped his little playing and said to me, "can we take a picture of that". It was like the world stood still. I sat there, for what seemed like forever, trying to comprehend what just happened. I said, "what did you say?" He looked at me like I had the comprehension problem and said, very slowly like you might speak to someone that didn't understand your native tongue, "can we take a picture of that". I about hit the floor. I wanted to scream from the rooftop. Instead I called my husband and told him what happened. Honestly, I think he thought I had been drinking and hallucinating. But, he got home that night and couldn't deny what was happening in front of his own eyes.

As we got him around friends and family I wondered if they would notice.

They noticed. Oh, they noticed in a big way. I kept hearing, "what happened", "what did you guys do", "how in the world...". They noticed. My Mom was sold on MB12 and joked we should give that everyday. This was huge for him and it was what his body needed. Our DAN was shocked when we returned for lab results. He had a non-verbal patient who was now verbal in a matter of less than 2 weeks. But he wasn't totally undone because this was his job and he sees healing in kids weekly.

From that point on we were sold. Supplements became a part of our lives. Diet change became the norm. Research into toxins, environmental issues, things we use in our home, and more became typical weekend activities. We discovered our dishes were a bad idea for our sons. They had the same toxins in them that we were trying hard to get rid of in their bodies, they went. Cookware that we had used for a long time was tossed because it was not safe for our kids, or ourselves. Foods that we never would have dreamed harmful were no longer on the shopping list because our kids had clear reactions that we didn't realize were reactions. (Ever heard of a child screaming for hours after eating an apple? Yeah, I have watched it with my own eyes.) The list goes on.

Is our home 100% toxin free? No. That's impossible. We live in a world with toxins everywhere. I just discovered that the very air we breath in our county has one of the substances that our younger son is intolerant of in it. Can't get rid of air. So, we help clean the air in our home. We make their world as safe as possible so when the attacks come, their bodies are stronger and not over burdened in order to fight it off. We have changed things as simple as shampoos, soaps, cleaners. We have changed OTC pain meds, snacks, and even consumables that I use in the kitchen. We are a work in progress. We refuse to stop our kids from having a fun time as children. So we don't freak as much about toys and outside items. But we do make them safer as we can. As I posted a few weeks ago, we removed some of the toxins from our son's tube feeding system once we discovered all that was in the bags his formula was held in each feeding time. These are simple changes that, while not making much of an impact on how we live our lives, make a huge impact on how their bodies function.

Look, I don't know if we can cure what ails our sons. They have a lot of health issues. But, would you rather have a sick child with a healthier body or a sick child with a sick body? That's all this comes down to for us. If they are going to have issues in this world, let's make them as healthy as we can in order to be able to be strong and fight against what is going on with them. We arm them spiritually to put on the full armor of God. We arm them with education so they can make sound choices and have successful lives in whatever God calls them to as adults. We are arming their bodies so they can be as healthy as possible. It's really that simple.

Talk soon.

How I Got Started on This Path - Part 4

From here

This is a continuation of our story being told in multiple parts. To start at the beginning, or to catch up on a part you missed, check out these links: Part 1, Part 2, Part 3.

When we got the testing back we learned something very new. We learned that Autism is not just not looking at us, not speaking properly, and stimming. It's so much more, so much of a whole body experience for these kids. In short, our kids were sick inside. Gut issues were horrendous, yeast was flaring, immune systems were not doing their jobs, the list goes on.

So, we piddled around with biomedical approaches, never being truly serious about it. And, we had sick kids. Oh, the world saw Autism and never cared that we weren't giving supplements or such, but we knew the truth and were just too tired, to worn, to frazzled to keep up with the stringent protocols.

Then our older son started to take a turn for the worse. Let me stop here and ask you a question. Did you know that if a child has Autism he or she can have a whole host of issues that have absolutely nothing to do with Autism but affect him just as much? Yeah, it's logical to us but there are many, many doctors who have no clue. They see Autism and then try to make every issue your child has fit within that world. It's like trying to fit a broken leg under the umbrella of a child's diagnosis of brain cancer. A child with cancer can simply break their leg and need completely different and totally unrelated treatment for that leg. Doctors need to remember that.

Our son used to love going to our local park with my husband. There was a nice lake there with a hiking trail around it. About half way around the lake, if you were willing to climb down a bit and go off trail, you would find a hidden little cave. They spent so much time in that little cave playing and talking. The entire trip, if you never went off trail, was a bit over a mile long. But, with what my husband and son did, it was probably closer to 1 1/2 - 2 miles total. They went off trail a lot to explore whatever suited their fancy. My son would come home with energy to spare.

Slowly we noticed he wasn't handling these walks as well. His energy levels seemed to be decreasing in big ways. He also, during this time, started to slow down on his eating. He was limiting his variety of food and restricting his intake. It seemed as if he honestly didn't even feel hungry most of the time.

It took us years to figure any of this out. We still don't have a full understanding of what is going on with him. But, we are getting closer each day. After our son had pretty much fallen off the growth chart, our GI said it was time for a feeding tube. He just wasn't able to sustain himself with his oral intake. So, a year ago today (wow, it just hit me, today is our tubiversary), we had a G-Tube placed for our son. It was the scariest thing I ever did for him, and it's been the best choice we ever made for him in traditional medical care.

He also started to have what we call "crashes". He just has no energy at all. His whole demeanor changes. It can take something as big as walking a few aisles in a store to cause one or something as small as having a tube feed. Everything makes him tired. Naps or a good night sleep don't take it away. Because of this we are the owners of two new things.

1) We now possess a handicap placard for our cars. That was shocking to see come in the mail after our doctor sent off the forms to the state. I wasn't really prepared for that and what it implied about our family.

2) We now own a wheelchair. Our son loves it. I think he likes that there is no more pressure for his body to do more than it can anymore. He does what he can, the chair does the rest. I hated our visit with the DME and therapist to order it after our doctor prescribed it, but the second we saw it and saw our son's face as he sat in it, I see it for the blessing that it is.

I am going to stop here. I will finish up with part 5 and end our story telling you how we tied all this into moving to a more toxin free life. You needed to know our history to understand our present.

Talk soon.

Less Toxic Tube Feeding System

This was inspired by some women on a feeding tube support board I am a part of on Facebook. We started discussing what was in the bags that our kids formula and tube feeds were sitting in all day and night. Brainstorming started on many ends. My husband and I have been working on this plan and I finally have a workable model.

I am going to share the parts with their part numbers (for those parts that have them) and then how I put it together. This will allow for about 250ml of formula or blended food to be used. I am currently looking at 3 or 4 larger bottles that will hold 600ml or more for longer feeds. But, I haven't received those or tested them, so I am waiting before I share it as I don't want anyone to waste any money on useless parts.

There will be a lot of pictures in this post as I don't want confusion from merely writing names or descriptions. Forgive the quality of the pictures, I used my cell phone for speed.

Supplies

First I purchased an insulated beer bottle koozie. I found this at Walmart and it cost $1.00. There were a few color choices if your kids would like to choose a color. Make sure it's the type with a zipper. 

Then I purchased safe baby bottles. It needs to be a narrow neck, not the wide moth variety. You can also find bottles this same size that aren't baby bottles per se, but you must make sure the threading starts at the top. Many have a gap of smooth glass and then threads. That will not work. Amazon is a great source for lead free glass baby bottles. This is just a sample. You can use Dr. Brown's glass bottles, Lifefactory glass bottles, and more. You just need to make sure it's the narrow/standard mouth.

Now, this is where specialized pieces come into play. You will need to purchase a Kendall Kangaroo Safety Screw Spike Adaptor Cap. I purchased mine from ADW Diabetes. You don't need a prescription. They cost $1.92/cap. You can buy singles, multiples of 4, and boxes of 30. Your DME can also most likely get these if your insurance covers your feeding supplies as they are feeding equipment. 

ADW's part number is: 61775762

Kendall's model number is: 775762

This exact design is important. Notice the tall opening port and the small hole? The port is for the next part I will tell you about. The small hole is to allow air pressure to normalize for flow of food. 

Last is the tubing. I purchased an Enteralite Spike Right with Proximal End Connector. You can get this two different places without a prescription. ADW has them for $3.39/tube and Vitality has them for $4.20/tube. 

The pictures are misleading. You will see bags, tubing, etc in the picture but you will only get the Spike Right set, so no fears. 

Part number for Vitality and ADW is: 12223318

 This tubing has all the connectors and the cassette for your feeding pump to work properly.

This is what the end looks like. You will see why this is important in a minute. 

So, those are the parts we need. Total, for one complete set up, I paid $8.62. However all but $3.39 of that is reusable so you wouldn't pay that each day. And, $6.12 of that is medical equipment that you could go through your DME for, which should be covered by insurance. The bottles and koozie are reusable for an infinite amount of time and they account for $2.50 of the total cost. 

Now, let's move on to how to set this up so we can actually do a feed for our child. 

Directions

It's time to put this all together. This is very simple and very quick.

• Remove the lid from your baby bottle. I tossed mine as I will never use them since we are far past the baby stage in our home. Pour your formula/food into the bottle. 
• Screw on the purple spike cap and close it tightly. 
  
• Next, place the spike end of the tubing into the open port (the tallest and only open one on the purple cap). Make sure to screw it on tightly as well. 
• 
  
  
  
• Put the bottle into the insulated koozie. Zip it up and you are done. 
  
  
  
  

This is where you have some choices and decisions to make. You can use a backpack if you have one and slip the insulated covered bottle into the bag holder. I have a Kendall Joey backpack (not sure why the DME gave me that since we use an Enteralite, but it works great). It has a clip like the picture below. Fully extended (it's adjustable), it holds this contraption I made above perfectly and it doesn't move or slip. 

From here

You could also attach a piece of fabric or woven belt type material to the insulated cover and hang it from an IV pole (or whatever you hang your bag from now). You could accomplish this a few ways.

• Sew it on by hand or machine. 
• Use a snap setter to easily put snaps on each piece and attach it that way.
• Use grommets to attach the two items. 

Another idea is to make a bag. I am going to be making two bags for my son. One will hold this smaller bottle and one will hold the larger one. They will be similar to this one ... 

From here

Or this one ...

From here

But it will be a perfect fit for the actual bottles I use. I will make it open at the top and just a hole at the bottom so the opening doesn't open up in the middle of a feed and the bottle drop out. 

My husband has an insulated water bottle holder that is an option as well if you wanted to simply purchase a ready made item. It is very similar to the picture below, is insulated, and has a handle. You could simply tack the handle so it ends up at the other end in under 5 minutes. You can find them online or at any camping supply store (where my husband got his).

From here

My son was my final test subject. After a few well worded jokes from him, I asked him his thoughts about it, did he like it, did it make the feed feel any different, etc. His end result was two tubie thumbs up. 

The flow rate is the same and wasn't messed up with the different container. Clean up was a breeze. You know, let me share that with you as well. 

Clean Up

• Unscrew spike end of tubing from cap. 
• Unscrew cap.
• Empty and wash out bottle using warm soapy water. 
• Wash out cap using a rag or a gentle dish brush using warm soapy water. Air dry. 
• While squeezing the flow part of the tubing (the part of the tubing cassette that you squeeze to prime it), hold the spike end under warm water. It will clean out the tubing for you in seconds. After it is running clear water, stop the water and continue to prime it so all the water leaves the tubing. Air dry.

I use what we call the tubie octopus for all of my feeding tube parts that need to air dry. (extensions, tubing, caps, etc.). It's actually a baby bottle drying rack. It looks similar to the picture below. The cup in the center is perfect for 10ml and 60ml syringes, I drape tubing over the arms, can set caps and such on the grid at the bottom. It works perfectly. 

That's it. That's our new feeding system. Once I test the larger bottles I will make a second post sharing the name and vendor of those. If you find a larger toxin free glass bottle with the proper size opening that holds 600ml or more before I post, please feel free to share it in the comments and I will add it to my research and future post.

If you want to join our Toxin-Free Tubie group, please feel free to request membership on the board. We would love to have you.