Interview with the Little Misters About Their Feeding Tubes

Today I thought I would spend a bit of time interviewing my two sons about their feeding tubes. I affectionately refer to them at Linus (younger son) and Charlie Brown (older son). 

We will start with Linus:

Me: Linus, how are you feeling today?
Linus: Good.

Me: So, it's been a little over 2 weeks since your surgery to put in your feeding tube. How is your feeding tube site feeling?
Linus: Good. It is starting to feel like a part of my body ... sometimes.

Me: What is your favorite part about having a feeding tube?
Linus: I don't have to worry about how much I eat. I am happy I don't have to eat a certain amount each day. I can eat how much I want and stop when I want.

Me: What is your least favorite part of having a feeding tube?
Linus: NIGHTIME FEEDS!

Me: What did you feel or think when you heard you would be having a feeding tube?
Linus: I thought it may be very painful.

Me: Were you right or wrong?
Linus: Well when I woke up from surgery it kind of hurt a little bit but then it got better. But it didn't hurt like I thought it would.

Me: I know a lot of parents want to know and a lot of kids who are going to get tubes might like to know, what does it feel like for food to go into your tummy through your feeding tube?
Linus: Mostly I feel nothing. But if the food is cold my throat gets cold.

Me: What do you think of your cool tubie pads?
Linus: I think they are fun but sometimes they sting a little big when I put them on (this is because he is having a tubie issue that the pads are actually fixing, but we aren't fully healed with the complication yet).

Me; Are you glad your doctor wanted you to have a feeding tube?
Linus: Sort of.

Me: Do you think it will help you? How?
Linus: Mm hmm. I really think it's going to give me more energy.

Me: Is there anything you want to tell kids that are going to have to get a tube that might help them?
Linus: They put you to sleep so you can't feel it. I don't think it hurts bad, but let your Mom know and the nurse will bring you pain medicine.

Now we will move on to our older son, Charlie Brown. He has had his feeding tube almost 2 years, so his perspective might be a bit different, thus I will be asking him the same questions.

Me: Good morning, Charlie. How are you feeling today?
CB: I am feeling good. 

Me: So, it's been almost 2 years since your surgery to put in your feeding tube. How is your feeding tube site feeling?
CB: It feels like there isn't a feeding tube site.

Me: What is your favorite part about having a feeding tube?
CB: It takes the medicine for me.

Me: What is your least favorite part of having a feeding tube?
CB: When I get a tube change.

Me: What did you feel or think when you heard you would be having a feeding tube?
CB: (pretends he faints) Crying and begging.

Me: How has that feeling changed?
CB: Now I would cry and beg to HAVE a feeding tube because I feel better. It's like a part of me, like my hair, my eyeball.

Me: I know a lot of parents want to know and a lot of kids who are going to get tubes might like to know, what does it feel like for food to go into your tummy through your feeding tube?
CB: It doesn't have a feeling.

Me: What do you think of your cool tubie pads?
CB: I don't care about tubie pads. I like them to be on, not off.

Me; Are you glad your doctor wanted you to have a feeding tube?
CB: Mm hmm.

Me: Do you think it has helped you? How?
CB: I think it has. It made me stronger.

Me: Is there anything you want to tell kids that are going to have to get a tube that might help them?
CB: Once you get used to it, it's like a part of your body. You get extra sleep because they put  you to sleep to get the tube.

Feeding Tube This and That

What a week. It was a tubie kind of week. If you don't have a tubie in your family, you won't get that. If you do, well, you are sighing and patting the screen in empathy for me.

Linus has been doing so well with his tube surgery. But now he's having a harder time. He's having some pain at his site and we aren't sure why. His surgeon gave him the all clear, so we know he doesn't have an infection or issue with his site that can be seen. But he's really hurting and not happy about it. 

Add in that he's gotten some infractions this week on his diet that I am not sure what they are and he's also in a horrible mood with food reactions. Poor buddy. I just want to snuggle him up and make it all go away. I feel so bad for him. 

We also learned these past 16 days since his surgery that he has a reaction to tape. Sigh. He had tegaderm over his surgical site, that was not good. He had tape after that, it was even worse. Every tape tried just tore his skin up. He has blistering and his skin is peeling. His surgeon told us to not allow anymore tape to be put on him unless it is a true emergency situation. 

That wouldn't be horrible but we are still working on moving him fully to a blended diet
(wahoo, even his GI is happy we are doing that) so he still has night time feeds. With those feeds come a need to tape his extension to his stomach so it won't move or pull on the feeding tube. That had to stop. Tonight was our first feed without the tape. I had no clue what to do. I hmm'd and haa'd for a long time. Someone on a feeding tube support board suggested wrapping a piece of tape around the extension creating a tab on the tubing and then using a clothes pin to attach it to his shirt. Then it wouldn't move but the tape wouldn't be on his skin. 

I tried it. 

I thought it would work after looking at it. 

He came to me 96 calories later unable to stand it saying it was pulling on his tube and it hurt because it moved with his shirt. No matter where we put it he didn't like how it pulled on his tube as he moved and it caused stinging in his site. Grr. 

So, I pulled the formula and pump and gave him a small blended feed to at least give him some of his calories and now I have GOT to figure out how to effectively give him all of his calories during the day without slowing down his oral feeding and it needs to happen tomorrow instead of a weaning process. 

Eh, who needs sleep. 

I went into this surgery thinking it would be a breeze since I am a second time tubie Mom. Ha ha ha, yes, the laughter is loud here. 

Last Week's Happenings - With Pics

I always like posts that show fun end of week recaps of what happened in a blogger's home, so I thought I would do one this week.

We have chickens. They are finally laying consistently for us each week. But this one even surprised me. The egg on the right is a standard egg. It is the size of all of our eggs. The egg on the left is, what I can only guess, is from a serious overachiever. Yikes. Of course, my first response was OUCH! I am thinking it's safe to guess there is a double yolk in there. We will see tomorrow when I cook it.

I found a set of dry herb jars with lids by Ball.

Picture Source

I didn't know how to dry spices when I first got them, but they are a new favorite in our home. I found the easiest way for me to do this was to simply use kitchen string, tie up small bundles of herbs, hang them in the closet in our music room, and wait. I pull them out when they are dried, use my Pampered Chef chopper to chop them up to my desired texture, and put them in these cute shaker jars. You can't get much simpler than that.

The Sound of Music - oh my! I am a major fan. I always grew up wanting to be Maria. To have nuns sing about you in that disapproving but really tickled at you way, to have all those children come and sing in your room in the middle of the night, making clothes out of curtains, bravely moving forward in leaving your home country to forge a safe passage for your family ... how does it get any better? Oh, that's right, awesome music!

When my husband saw, The Von Trapp Family: A Life of Music he had to pick it up for me. We watched it one night. I will start with, don't get excited thinking it's a musical with great numbers you remember 30 years later. Yes, there is some singing, but it's a small part of the movie. While it's the path to getting them out, it's not the focus. This is the story from the oldest daughter, Agathe Von Trapp's, view point. It's worth the time to watch if you are a Sound of Music fan. But if you want to not be disappointed, don't go into it thinking it's the same as the original. But the scenery is gorgeous and is shows a different side of the story (and there are big changes in this story from the original).

Our oldest son has been saving up for a new Lego set. He decided on the Mystery Machine. I have to admit, it's my favorite set he has so far. 

I mean, come on, there's a Lego Shaggy and Scooby ... 

And Fred is wearing an orange ascot on his little Lego body. How can you not smile when you see this?

Ruh roh! I forgot to mention it even comes with a big sandwich for Scooby and Shaggy to fight over.

 I admit that I might be a bit biased, but how cute are these boots? You don't know much about our family, but let me fill you in a bit. My husband is country as they come. I have always called him by his nickname, "my plowboy". Our first date he walked up onto the deck of the restaurant in the big city we both lived in wearing his boots (boots that had actually worked on a ranch), Wrangler jeans, and white straw hat. Yeah, he had me at hello. So, how my sons don't live in cowboy boots is beyond me. We just haven't bought them any. Until this weekend. Our younger son needed some boots, actually both boys did. We normally buy them hiking type boots but our younger son spotted these and it was all she wrote. He had to have them. Sigh. I will say, he's just the cutest little cowboy I have ever seen.

 Last, but far from least (this one happened today, but I am including it in my weekly wrap up), is a little gift my husband bought for me. This might not seem romantic or very gift-like, but it sure lights me up! It's a mini fridge for our two kids blended tube feeds. It was set up on a very good day. Today, the day we set it up, our dietitian emailed us sharing our GI doctor's support for a blended diet for our sons g-tube feedings. Oh, we do it anyway, but never had their blessing no matter how successful our older son is on the diet. But it would be nice to have them on board. Our GI is very much on board. Our dietitian is not. But, I don't need her to agree. She works FOR our GI so she will have to help support us in this since our GI thinks it's a good idea. I would like her honest support, but I will take what I can get.

With two kids with blended diets, it takes up a lot of space. I have the food pre-blend and then the food in the bags post blend. Add in our normal food and foods the boys do actually take by mouth, and our fridge was running out of space in a big way. This solves that issue. It even has a small freezer space in it that will hold our freezer bricks for our insulated bags.

So, that's what we have been up to this week. We are gearing up to start school, have our younger son's post-op appointment with the surgeon to remove the bandaging from his new g-tube site, and then hopefully we will be on the standard 3 month appointment time frame after our next visit with the GI. Things are really moving forward. I will be glad to settle into our new normal without the disruptions.

A Day in the Life of a Blended Diet Tubie Family

A mom on my feeding tube support board posted this video and I thought it was a great way to see the realities of a feeding tube family and how we really just feed whenever and where ever our child needs to eat just like any family with children who eat by mouth do. I love that it's sped up so you can get a big picture without the time spent for many of these videos. I hope you enjoy it!

Easy, Inexpensive (sometimes free) Calcium Supplement

Did you know that calcium is the fifth most abundant element by mass in the earth's crust? Yet, we always seem to be lacking in this area, especially our kiddos. We all know milk provides some calcium. But, did you know it's NOT the food with the highest amount of calcium. It just has a great PR firm. A short list of foods containing calcium, some with higher amounts than milk and often with less volume than a serving of milk is below:

Collard greens
Broccoli (also has more vitamin C than an orange)
Broccoli rabe
Kale
Edamame
Bok Choy
Figs
Oranges
Sardines (way more calcium than milk)
Canned salmon (same calcium level as milk)
White beans
Okra
Tofu (far more calcium than milk)
Almonds
Egg shells

That last one is the one I want to touch on. Egg shells are a different item than the egg inside. Egg shell is actually made of calcium carbonate. 1/2 tsp of powdered egg shell has 350 - 400 mg of calcium which is equal to or far greater than a serving of milk.

The best part is, most of us already have this excellent source in our homes. Did you know it's very easy to turn these items we either toss in the trash or throw around our rose bushes into free or very inexpensive (depending on if you want to view the shell as trash which you wouldn't include in the price of your egg that you purchased or got from your own chickens)  calcium supplements? Well, I am going to show you how I did it and did it in a very short period of time.

I started with a lot of research. I didn't want to do something that would be harmful to my family. Once I found that this was not only safe but a pretty accepted practice and use for shells, I moved on to the how. I needed this to be in powered form for two reasons.

1) My sons are g-tube fed so they prefer their supplements to go through the tube. Add in that I can just toss the powder in their feeds and it's even better.

2) I can put these in capsules and take them myself.

Before I go any further, I want to add a disclaimer. I am not a doctor, dietitian, or a medical professional of any kind. I am simply a Mom who likes to do things as naturally, yet simply, as possible. Please seek any advice you might need from your own medical professionals before making any diet, supplement or medication changes or before taking the advice of any online source.

Having said that, let's go with the how-to of this project:

1) Step one is easy. Collect egg shells. You can do this a few at a time, but it's far easier to collect shells for a bit and do a bigger batch. If you want to collect the shells simply put them in a ziploc type bag (we actually use an undyed wax bag) and put them in the refrigerator until you collect enough shells for you to work with. The best part is, there's no magic number. When you need more, make more.

2) Rinse the shells to get off any of the egg white, etc.

3) Place these shells in boiling water for 15 minutes to help kill off any bacteria which might be in the eggs. I do nothing special to them other than using a butter knife to make sure they are all under water.

4) After they have boiled you can use a fork to remove them to a towel to dry for an hour.

5) Once dried you have a few choices. You can put them in a skillet for a few minutes on medium heat or you can put them on a cookie sheet and put it in an oven at 200F for 10 - 15 minutes. This not only ensures the shells are very dry (you do NOT want any moisture on your shells) but also just makes sure you have no bacteria on them (if you ate the egg, most likely you are quite safe). I chose to put them on a cookie sheet and used our counter top convection oven.

6) Remove a few at a time and put them into a coffee grinder or blender. Again, make sure it is very dry.

7)Blend/grind until you have a fine powder. Do this with all the shells until you have them all powdered. I used the dry canister on my Vitamix and it worked like a charm. But you can use a simple coffee grinder and get awesome results. 

8) You can then store them in a small mason jar type container. Put it in the fridge and you are ready to use.

WARNING: Do not use more than 3/4 - 1 tsp/day. Calcium is safe to supplement, but you do not want to get all your calcium via supplementation. If you are using this with children, a rule of thumb is 50% of your calcium dosage can be done by supplements. So, if your calcium should be at 800 mg, use 1/2 tsp for a total of 400 mg and check the list above for wonderful sources of calcium to eat at each meal.

Here are a few resources to see how others do it:

Mama Natural

Healing Naturally

Alex Jamieson

From Heart Surgery to Feeding Tube with a Few Trips Through New York

What a wild ride we have been on the last bit of time. I know I have been remiss in posting, but that's because I was just trying to hang on to our sanity here.

Have you ever seen the "I Love Lucy" episode, "California, Here We Come"? Lucy is trying to map out the route from NY to CA making sure to include all the side trips everyone wants to add. Ethel walks into her apartment and she proudly holds up the map above. When questioned, Lucy replies, "Well, the only thing is we have to go through New York three times on the way to Chicago." That pretty much sums it up. I feel like we have been through New York 3 times on the way to Chicago. Hmm, maybe I will turn that into a new euphemism in my life. 

Our younger son had some issues with his heart. We saw his pediatrician who wanted us to see a pediatric cardiologist. We saw her, did testing, did more testing, and then had a holter monitor. They initially thought we were just dealing with an innocent arrythmia and sent us on our way. I loved that conclusion and was happy with it (trip 1 through New York). 

But his symptoms continued to progress, they increased in frequency, and his already poor eating (he has had eating issues for the past year) was worsening directly due to this heart problem. We saw our Cardiologist again. This time she started to get concerned. The words heart surgery were thrown out, and not lightly. She was suggesting a scary issue and we had even more testing. Those results came back negative. Just in passing our pediatrician said, more to himself than to me really, "I wonder if this could all be food related". Was this man nuts? A heart condition that was so extreme it mimicked an issue that would need heart surgery and it's all caused by food? Yeah, I love ya doc, but you have gone off the deep end on this one. 

Tutt, tutt, I spoke too soon. I figured, after some research, it couldn't hurt to try out our doctor's loony idea. So, we started to change up the diet in our home. That's when we noticed some huge changes in our son's heart issues. It was incredible to watch. I was so excited. We proudly walked through the stores with our very specific shopping list knowing our pediatrician was such a rock star that he had helped our son's issues go away with a simple diet, all would be great now. (trip 2 through New York).

While our son's heart issues got better, his eating never picked up and we were quickly able to see a symptom that was being masked by the heart problem. He was having a lot of issues in his neck and stomach when he ate foods. This lead us back to our GI. It also lead us to more testing. The problem is, nothing was there (unlike his heart issues we could see on the testing). We did swallow studies, scopes, and even gastric emptying tests. It all came back beautifully. But our son was not feeling good when he ate, he was also feeling full far too soon in a meal (often after only a few bites), and just didn't experience a feeling of hunger most of the time. This all mimicked his brother's issues that he had when he was 6 years old. It also caused us a lot of stress as we kept picturing how bad our older son got before the doctors finally figured out what to do. 

So, we had a sit down meeting with our GI and laid it on the table. We refused to let our younger son get to the point our older son did, we wanted genetic answers if she felt this was a genetic issue, the list goes on. 

She listened intently to us and then got very honest. Our son had already stopped growing at our last visit. At this appointment he had started the downward swing on his weight and she was concerned that, just like big brother, it would start affecting his height as well and she didn't want that to happen. 

She also told us that she felt that there was a strong genetic component to what the boys had going on that was causing this feeding issue in them. I was excited, I thought we finally might have answers after all this testing. However, what she said surprised me as I hadn't heard a doctor say anything like it before. She said she felt there was a genetic cause to the kids issues but felt that science didn't know what it was yet. (hear those brakes coming to a screeching halt? Yeah, me too). I have never had a doctor suggest we might not get an answer because there might not be an answer ... yet ... even though there is a medical issue. 

So, we asked what the next step was. The next step was a feeding tube. Yep, round two. Two kids, two tubes, zero answers even though we have seen the best of the best with regards to doctors. 

Last week we went to the same hospital our older son was at 21 months earlier and had the same surgery he had to place a g-tube. Our younger son is now being tube fed just like big brother. (our third, and I pray final, trip through New York)

It was an easier decision this time around, but it's no less heart breaking. He's already seeing benefits from it though our first time of getting all his calories in was yesterday. We have to wean up to a full diet, we can't just start day 1 with his full calorie goal. I am far, far from organized yet. I am still figuring out a system of feeding two children with a feeding tube. I know I will get there, but I hate this crazy flying by the seat of my pants I am in right now. 

That's where we are right now, and it's why I haven't been online lately. I hope to pop on far more frequently, and hopefully with some great resources and insight for you all. 

Well, maybe not the great insight.