Feeding Tube Awareness Week 2017 - Day 5 --- Where I Let YOU Do the Talking

Today is the last day of Feeding Tube Awareness Week 2017. Thank you all for taking time to read my posts, learn about our kids, and increase your own understanding of our unique situation. It's been a blessing to share all of this with you.

So, today, I would like to open up the floor (if you will) and allow you to ask ME or my boys questions. Yes, if you have a question for the boys, no matter how funny you might think the question is, post it or message it to me and I will even ask them. They are very willing to talk about it in this manner. I have even had people ask them how it feels when the food goes into their tummies.

Have a great weekend!

Feeding Tube Awareness Week 2017 - Day 4 --- The HOW of our Feeding

I have shared our stories on how we ended up with two little boys who needed feeding tubes. I am sure they left your heads scratching on the WHY, welcome to the club. It's all so confusing, but our boys have always done that to doctors and their parents. LOL.

Today I am going to share HOW we feed our sons.

When we started this journey with Charlie Brown we started with formula. Think baby formula but with the nutrition an older children needs. It wasn't great, but it was all we knew. It took a bit to figure out because he was refluxing a lot until we realized he was one of those kids who couldn't tolerate soy oil. We got rid of that with a new formula and things got better. They weren't great, but he wasn't refluxing every meal.

As we went along I started to research. Yep, I went into research mode like I do with all of my kids issues. I am pretty sure my kids doctors roll their eyes when they get an email or phone call from me saying, "I have been reading about ...". But, they also respect me and, most of the time, realize I have done quality research and will go along with me or even think I figured it out quite well.

My research was looking at blended diets. This is not a new concept. In fact, people who had feeding tubes before the formula industry began, and for quite a while after it began, were given blended diets. You simply blend real food and feed it via tube. Not a hard concept. We decided to make the switch.

This was a big learning curve as I had to get enough calories in but also do it in a small enough volume that his tummy was OK with it being in there. We did a lot of trial and error as most GI dietitians are NOT equipped to help you feed your child real food. That was a shocker to me. I figured they were DIETITIANS. I thought that meant this would be their area of expertise. I was told it was great, go to the FDA with his calorie goal and it will tell you the amounts of each type of food he should have because they didn't know. They only knew how to tell me how to mix the formula for the right concentration based on calories/oz. Yikes.

I blended, froze, and served him pureed meals. He did so well on them. He was able to go at a faster rate than with formula and not reflux. He also looked so much healthier with real foods on board.

When Linus received his feeding tube I had done even more research. There was a "formula" on the market called Nourish.

Nourish is an organic plant based diet that comes shelf stable and ready to feed. No mixing, no blending, nothing. I knew they would recommend formula, I had my suggestion ready for them. Amazingly they approved of the formula I wanted (it isn't really a formula, it's just a blended diet in a packet, but qualified as formula with the doctors, nurses, dietitians and insurance companies). We went home with that prescribed.

Now I blend a lot of their meals and use Nourish on hard days or when travelling.

But how do we physically feed our kids? I know people have asked us. Here's a break down of the steps with pictures included at the end.

1) I put a 12" extension (long tube) onto their g-tube (after filling it with water so that I don't fill their tummies with air) that's in their tummy. It locks into place.

2) I fill a 60ml o-ring cath tip syringe with the blended food.

We use the Miracle brand o-ring syringes that you can purchase online. The Squirrel Store has the cheapest prices, most reliable in-stock, and quickest shipping I have found.

3) I put the syringe into the large opening of the extension and unlock the clamp.

4) I slowly push the plunger on the syringe and allow the food to enter the extension and eventually their feeding tube, which leads to their stomachs. This has to be done slowly or it will make them reflux or fill up too quickly.

5) I close the clamp, remove the syringe, and repeat until all the food is gone.

6) I flush the extension with 60ml of nursery water. This not only cleans out the extension of extra food so we don't miss any nutrition, but it also gives them 2oz of water and cleans out the g-tube so it won't clog.

Yes, we use a different type of syringe for this. These syringes last about a day when you put real food into them. The rubber end just kind of eats away. So we purchase the o-ring out of our own pockets since once will last for months. These are paid for with our insurance through our DME so we use them for other things like water pushes and such.

7) I remove the extension, put the cap back on the g-tube, and we are done for the meal.

Some of our other medical supplies we receive are:

Pump: This enables us to give larger feeds that need to be done at a slower rate so their body will accept it, give feeds on the go, or for overnight feeds (just what it sounds like, a slow rate all night long) There are other brands, but I feel this is the best for a blended diet and we are blessed that our DME provides the Infinity brand.

Feeding Tube Bag: When I use the pump I have to use a feeding tube bag. You can see it looks like an IV bag of sorts with long tubing and a cassette to go into the pump. I fill it to the desired amount, attach it to the pump, set the rate and volume on the pump, attach the end of the tubing to the extension mentioned above, and hit start. We hang the pump and bag on an IV pole at night or put it all in a backpack if we are on the go.

10ml Syringes: The little syringes are for medications, vitamins, and tube changes (yes, I have to change the g-tube that's actually in their tummy twice a year or if it fails).

We have many more supplies that come to us each month from our DME, but these are the most commonly used.

Benik Belt: This is what Linus has to use to secure his extension because he cannot tolerate any tape on his skin. This is called a Benik belt and has been such a huge help for him and has kept him from having massive sores due to his tape issue.

Vitamix Blender: In the tube feeding world, it and the Blendtec are pretty much the only acceptable blenders. They are professional grade (if you get a milkshake at a fast food or sit down restaurant, you got it from a Vitamix in almost every situation), and can handle the amount of blending needed to ensure a smooth puree that won't clog a tube. You can do it with cheap ones but you will burn out the motor pretty quick and you must always strain your blends and limit what you can put into them. It triples your work and limits your food choices.

Feeding Tube Awareness Week 2017 - Day 3 --- Linus' Story

Feeding Tube Awareness Week 2017 - Day 3

Yesterday I wrote about Charlie Brown's story with his feeding tube. Today I will share Linus'.

Linus's need for a tube shocked us far more than Charlie Brown's. Who would, after all, think they would have two children with this type of issue?

Remember me saying Charlie Brown was born such a calm happy baby, life was good? Linus was 100% the opposite. Oh, he was born calm and happy, but that soon ended. His lactation consultant in the hospital used to say she had a 30 minute break every time she came to our room because he was just a nursing champ, slept well, was just good with being here and doing what he should be doing.

He got his Hep B vaccine and within minutes he was not that baby anymore. He started this horrible cry and didn't stop. Nursing became a battle field to the point we had to move to bottles. He cried all day and all night. We would work for 2 hours to get 20 - 30 minutes of sleep out of him. It had to be a very specific routine or forget it. We begged his pediatrician to help us. His response? "Some kids sleep less". No sir, this is not a 3 hour nap only being 2 1/2 hours or an extra 15 minutes of wake time. This is a child sleeping 4 hours a day total, which means I was getting less and Daddy was only getting a bit more because I would work so hard to keep Linus out of earshot since he had to work.

Then came the reflux, the horrible reflux. The only reflux I have seen that was worse was in a friend of mine son. He would eat, up it came ... and often half way across the room. Almost all of his baby clothes are totally ruined from reflux. There was no saving them for his children.

We moved him to an allergy free formula and thickened it and that helped somewhat, but not totally.

We finally moved to baby food and the reflux got a bit better, though the crying never stopped. It was nearly constant. If he was awake, he was crying. ECI said they had never seen anything like it. I couldn't leave the room, even if he could hear me. No one could hold him except me, even from his first week of life. No one! Not even Daddy. ECI worked to try and help him overcome this. They failed. Oh, they tried hard, but they had never seen a kid like this. We started with private therapy and they almost gave up on him but I was insistent. We had to help him. He couldn't crawl, roll over, or anything because he couldn't be out of my arms (even Daddy's arms were better than the floor to him, and that's saying something).

Once we got his therapy semi-successful, he blossomed with his milestones. There was no physical reason he couldn't do them, it was whatever this crying was that stopped him.

Eventually crying moved to just a horrible disposition in a toddler, than a preschooler, then ... well you get it. We would have hour long meltdowns out of nowhere many, many times a day and there was no way to stop them.

During this time brother got his feeding tube and life was trucking along, or so I thought. We began to notice Linus had slowed down his eating. I wasn't the first to notice it this time, and I was in a lot of denial with him doing it. My husband told me, finally, ignoring it wasn't going to help so let's face it. We tried even harder with him, and I had some new tricks up my sleeves. But, we figured out much faster with him what was going on and went to the GI. That's when genetic component started being tossed around with our doctors. Thankfully our GI tried a few things and then said, "we are stopping, time to put in a feeding tube before he gets as sick as Charlie Brown was when he finally got one."

His surgery did not go as well as Charlie Brown's. Our wonderful surgeon had retired and the new guys didn't like a GI helping with surgery, they wanted to do it their way and alone. So we didn't get the same procedure. Also, the hospital had a great new idea (said sarcastically). Go home 24 hours after surgery no matter what. He went home in a lot of pain and hadn't even had a feed with his tube yet. Horrible.

But, since then we have had success with his tube feedings. His need for control and his meltdowns have made it far more interesting, but they are working for him very well.

Side note: Some of you know about the heart scare we had a year ago (or so) with him and know that, because of that heart scare we know a huge component of why he has these nasty meltdowns (a few of you have witnessed them and realized how he smiles one second and is hysterical the next and you can't do anything to stop it nor did you do anything to start it). For those who don't, it's food. Yep. He has a very odd reaction to many foods on the market. Everything from dyes, to salicylates (that means apples send him raging), to preservatives. Label reading doesn't help because in our nation you are allowed to hide things and not put them on the label. (why?) But I will get into that story at another time.  

Feeding Tube Awareness Week 2017 - Charlie Brown's Story

This is day 2 of Feeding Tube Awareness Week 2017. Today I will share a bit of our older son's story. It's far, far too long to share in it's entirety.

Charlie Brown was a great little kid. He met his milestones, was advanced on his speech, smiled easily, slept through the night on his own at 6 weeks old, and just was a baby that made you want to be a Duggar and have 20. =)

Yes, he was injured and ended up with Autism at 2, but this isn't about that.

At about 6 years old we started to notice he wasn't eating as much. It didn't start out obvious. Instead of eating his entire half sandwich, he would leave the crusts. He would eat his carrots, tomatoes, and chips, however. Eh, kids don't like crusts, no biggie.

Then it was not eating the crusts and leaving half his carrots. He never left veggies behind. He LOVES veggies.

Then, it was eating 1/4 of a sandwich, no carrots, and only 2 small tomatoes.

You see the picture. Eventually it was walking off from complete meals, just sipping his drink a bit and eating nothing.

Eventually our son went from being in the 90th %ile to the 20th on the growth charts. His pediatrician at the time said that was totally normal. Kids move up and down on the charts. I thought it was bogus, but had no information to back that up. However, thankfully, he had a leg issue at that time and we had to see an orthopedic doctor. He was awesome. He's still our go-to guy. We were chatting about his leg, what it could be, etc and I said, "could that be why he's not gaining weight". He stopped, turned and looked at me, and said what do you mean. I told him about his growth issues. He looked me in the eye and said, "yes, a child does change on the growth chart, no more than 10% in either direction. If it's more than that, you need to have it looked at because that's not normal. This is an issue."

That was all I needed to hear. I knew my Mommy gut and my husband's Daddy gut wasn't wrong. We went to a GI and talked to them. They agreed, it wasn't OK. That started a battery of tests. We did med trials, natural remedy trials, adding tons of various foods and types of items to his diet, the list goes on. We tried for 4 years to get this child to eat enough to sustain himself. All we ended up with was missing my cousin's wedding and a child that fell off the curve.

Finally that fateful day came when we knew the GI would tell us it was time for a feeding tube. We walked in and she said it was time for a feeding tube. It make take us years to figure out why he doesn't feel hunger in a normal way, we might not ever know. But, either way, we had to make sure he was fed.

I was terrified. I knew it was what he needed, but I begged my husband to cancel the surgery the night before. I cried so much. I never wanted this for our son. He finally looked me in the eyes and said, "I feel like we have tried everything. The doctor feels like we have tried everything. BUT, if you can think of one single thing we haven't tried, I will call them myself and cancel the surgery and give whatever it is a try, no matter how crazy, off the wall, or rare what you find is". I had nothing. I knew in my deepest parts the doctor was right.

Our GI told us when she lifted his gown to begin the procedure (she did it with a surgeon in a method they used on all feeding tubes that I feel was a wonderful option), she was shocked how thin he was. She had never lifted his shirt, ever, past the belly button area to feel his stomach. She said we saved his life that day.

So, we had surgery the next day. He did really well. He had his first tube feed the next morning with Pedialyte. That went well and we started on formula.

Our GI told us when she lifted his gown to begin the procedure (she did it with a surgeon in a method they used on all feeding tubes that I feel was a wonderful option), she was shocked how thin he was. She had never lifted his shirt, ever, past the belly button area to feel his stomach. She said we saved his life that day.

In the first month he gained 10lbs. I knew we had made the right choice.

We had a long road ahead of us, and we do not tube feed the way we used to. But I will share all of that later this week.

Feeding Tube Awareness Week 2017

Today is the first day of Feeding Tube Awareness Week. So, here I am making you aware.

For those that don't know us very well, or are new to our family, we have two sons with feeding tubes. They weren't born with feeding issues, those came much later.

I will be sharing our stories of how we got here throughout the week. But I would like to answer a few questions up front.

1.  No, we don't know why our sons don't feel hunger. After more tests than I can count over the last 5 years, our GI had the closest answer of "probably a genetic issue, but medical science most likely doesn't have the answer yet." So, that's what I tell doctors when they ask. No one has ever argued that it wasn't possible that they didn't know.
2. No, you can't see their tubes. Neither of them is embarrassed by them but neither wants to lift up their shirts to show them to you. Please don't stare trying to see the bumps in their shirt, they know what you are doing. Asking is like me asking you to lift your shirt to show me your belly button as an adult. Just no.
3. Yes, we tried what you just suggested. We tried junk food. We tried no junk food. We tried airplanes with spoons. We tried stern, we tried funny, we tried loving and gentle. We did feeding therapy. Guess what? They are graduates of feeding therapy. There is no therapy for "doesn't feel the sense of hunger". Yes, we have tried ice cream. We have tried it. So, unless you want me to die a thousand deaths, don't suggest it. (that is unless you have a kid like ours and have a true answer)
4. No, if we leave them with you for a week they won't eat.
5. Yes, they will starve themselves.
6. No, this isn't so wonderful because we can get veggies in. Our oldest son would be a vegetarian if we let him. Veggies were never an issue.
7. Yes, they do look fairly healthy. That's BECAUSE of their feeding tubes. You should have seen what they used to look like. You would not have said the same thing a few years ago.
8. We have no clue when they will get them out. Yes, it might be never. So far we see no end in sight. They must eat 100% of everything they need to survive and thrive, take all meds, and all hydration by mouth for a minimum of 6 months, without one single slip up, in order for the doctors to consider removing them. We are no where near that at all.
9. No, I don't mind you asking me questions about them as long as they are honest questions, not passive aggressive judgement disguised as questions. I love to help people understand.

Photo Credit

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.

Feeding Tube Awareness Week - Day 4 (How I Feel)

So, it's Feeding Tube Awareness Week, but what do families really think about feeding tubes, about how our lives have changed since one or more of our children got one, and about the daily life with one? Well, I am going to share me and my husband's thoughts and feelings, what I have heard from other parents, and maybe a few quotes from my extended family members.

Other parents I have met and talked to have very similar feelings. I have yet to meet one that, down deep, doesn't love the feeding tube. Oh, they wish their kiddos didn't have to have it, they wish they were healed today, they wished they could eat by mouth in a way to sustain their lives. But, seeing as their children't aren't there yet, they are happy that this tube is available and saving their child's life. They don't view it as a sad or horrible thing. It's a blesing.

I decided to take the easy way out, I simply asked my family and friends a few questions. I will share them and their responses below.

For my extended family and friends, I asked the following:

When you look at our son, what are your feelings towards the feeding tube and regimen he has? Even if you don't fully understand it's intricacies, compared to how you felt 16 months ago when we first said he was having the surgery, how do you feel about it now? How has it helped his life, his health, anything else about him you feel it's affected? Is there anything you would like to share with those who are facing this road? Is there anything you would like to share with the extended family members or friends of those who are about to head down this road?

A friend of mine responds:

I was heart broken for him to have to endure surgery and anesthesia. Worried because I knew that he didn't respond to meds the way most do. Sick to my stomach knowing the worry his momma was going through and that I couldn't at least be there to hold her hand and pray.  BUT... grateful for a procedure that gives his wee body the nutrients it needs. That this can make all the difference in the world in how he develops not only physically but neurologically and emotionally.

And lets face it. Momma and Daddy sleep better knowing their son's stomach is full and full of all the good stuff!!!

My Mom responds. Take note, she is an RN and a Nana, so her view is quite different than most:

 Here are my thoughts as a medical,professional and as a Nana.

 First, as a medical person, I was concerned about his fragile nutritional status, yet somewhat fearful of the feeding tube. Never having cared for a G tube or a J tube, I didn't know what would be involved. Would it be easy to use and care for? Would he be uncomfortable with it?

 Eventually, I saw it as a gift from God that literally saved his life and his brain from starvation. I saw his color get better, his mood and attention get better and his personality come out more.

As a Nana, I was worried about his acceptance of it, how you all as a family would be able to work it into your everyday lives and would he feel different or left out? Would he be able to eat his favorite food? Would he be hungry?  

I   am so thankful he was given this chance to live a fuller life than he would have otherwise

For my husband's take, I personally interviewed him. Here's what he had to say:

Q: How awesome is your wife? (followed by giggling)
A: Incredibly awesome. (ahhh).

OK, on to serious things.

Q: What were your thoughts and feelings before our son got his g-tube?
A: He should have had it sooner. I was nervous about the care of my son and being responsible for that. I feel like the doctors didn't adequately follow my son's care and, if they had, they would have realized he needed the tube within several months of him not meeting his calorie goals.

(me inserting a note - you will notice my husband is much more level headed and "just the facts ma'am" about life. I am the mushy teary-eyed one.)

Q: What feelings did you have the day of and 2 - 3 days after his surgery?
A: The day of? I felt like the people at the hospital in charge of training us on the care of our son with the tube really didn't know what they were doing. You would think they would have started the training process before the tube was put in.

Q: How do you feel the tube has changed our son's life?
A: It's allowed him to get the nutritional need to grow and develop. I think it's taken the stress of meeting his calorie goals off of him.

Q: Good and/or bad, how has it changed OUR lives?
A: Good - I would say I'm seeing my son meet his milestones.
     Bad - It's just the complication of planning things like going camping or to Nana's for a few days.

Q: What would you tell a dad who just heard the words, "your child needs a feeding tube"?
A: Embrace it. If someone's telling you that, it's got to be bad. A lot of times you have a fear of the unknown. I didn't have that because, I figured anything would be better than seeing my child starve before my eyes. I am thankful for the feeding tube because I truly believe without it my son wouldn't be here right now.

Now, for my take:

My thoughts on my son getting a feeding tube before we actually had it? NO WAY! Just NO! It wasn't happening on my shift. My son would NOT be having a feeding tube. That was giving up. That was for kids who were sick and had serious feeding issues. Nope, not my son.

The problem is, my son is sick and has serious feeding issues. I was in denial about that. I kept thinking there HAD to be something we hadn't tried. Maybe a new therapy, a new technique, a new medication, the list goes on. I kept asking and no one had any ideas of anything we hadn't tried to get him to eat. I remember laying in bed the night before his surgery talking to my husband in the dark. I told him I didn't want this for our son. I begged him to think of something we hadn't done yet. He held me and said, "tell you what, you pray. Give this to God. Ask Him to direct us. If He gives us something we haven't tried, I will personally cancel that surgery myself." So, I stayed up for hours giving it all to God and asked for Him to guide us to what would work. Instead of a new therapy/medication/technique, He gave me peace. You know that old "peace that passes all understanding" thing? Yeah, He graced me with that.

And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus. Philippians 4:7

So, the next morning we woke up early and headed to the hospital to check in for surgery. I remember when they came to tell us our son was in recovery and we could go see him as soon as we talked to the GI and surgeon (they performed the surgery together), all I wanted to do was see his face and then see his tube. I needed to see both to know it was OK. Yes, I heard glowing reports from his doctors on how well the surgery went, how well he handled it, and so on, but I needed to see him to know this was OK. As soon as I saw his face and his sweet eyes looking at me, I knew this was OK. I asked if I could lift his gown and the nurse said it was fine. I looked and thought it didn't look nearly as scary as it did in my mind before the event.

We had a 4 day stay in the hospital (because of our silly insurance dragging their feet on getting the medical supplies he needed to go home with approved, but that's a whole other vent post for another day). He did so well. He needed a little pain management the first day, less the second, and by mid morning he was asking to go to the play room.

I remember watching with an eagle eye the first time they put something into his tube. It was like a kid watching the lunar landing on TV. I was in awe and scared that I had to learn how to do this. They were going to trust me to put formula, meds, and more into my son's tube? Were they nuts? But they trained me decently. My husband was right about the lack of training we received. I didn't know we weren't well trained until we got home into the thick of it. But we were not well trained. Thankfully there are lots of websites out there, YouTube videos, and support groups to help you figure out the intricacies of daily life with a feeding tube.

 I asked my husband how the tube has changed our son's life. Wow, I never imagined how much it would change his life. I was so used to seeing a sick child that watching his weight blossom was incredible. I remember going to follow up visits and seeing that number on the scale going up. I wanted to dance down the hallway each visit. I couldn't imagine why nurses weren't high fiving me and each other, balloons being released, and dance music being blasted over the intercom. My son was growing. To them it wasn't a miracle. They saw this happen each week in their offices. But, to me, it was a blessed event. He started to smile more, have more peace about him, grow, and did better in his school lessons. His brain was being fed so he could actually think. His reading seriously improved. He has dyslexia, but once his brain started being fed, not being able to read words stopped.

Our home life has changed a lot. Gone are the days of grabbing my purse and running out the door to do something fun. Now I have to think ahead of time. I have to make sure everything he needs is packed in our backpack (my new purse). I have to make sure, if we are gone longer than a backpack will handle that I pack him a bag. We have to calculate how much food to bring, which means water, formula (if we need that), blended foods, meds, syringes, extensions, pads, and the list goes on. We have a huge book case in the area between our living room and kitchen where my pretty wall hangings used to be. Now that area houses medical supplies. I have to think about every calorie that goes into my son's mouth so I can then calculate how many calories need to go into his tube.

I hated math in school. I hated science in school. I was never the little girl that wanted to be a nurse or doctor. I am now doing math daily, science weekly and I have done more nursing procedures than I care to comment. I have been asked by many doctors if I have had previous medical training or went to medical school for even a bit of time. I laugh and tell them no. They tell me how well I pick up the medical jargon, can use it like a pro, and learn medical procedures. I laugh, point to my son, and say "this was my residency". It's true. You just learn, as a Mom in this world, how to speak doctor and act nurse. Oh, I am no where near where an actual doctor and nurse are, but I am very comfortable filling in for when they aren't around.

I like what my husband told dads when he said "embrace it". You really have to. Your child's tube is like a new family member that has to be cared for. Seriously, it is bathed, sometimes gets diaper cream, is clothed (tubie pads), is fed, and is cared for 24/7. I mean, if that's not another family member, I don't know what is. So, just go at it full force and embrace it.

I know it's scary. Unlike my husband, I was scared. He is much more level headed and factual than I am. I think with my heart. This was my baby and I hated it for him. I think what would have helped is a lot more education up front, before we even had the surgery. If you are going through this, ask for it. Don't leave until you get it. Go online, look at the support groups, check out the Facebook pages, look at the feeding tube websites (the pictures above all link to a major website). Don't be afraid to branch out and tweak how you care for your child. Be safe about it but this really is an art form and every parent ends up with their own method. You CAN do this. Pray a lot. God will hold your hand through this just like He did mine. I am here for you. You can contact me anytime. You can do this and your child will be healthier for it. That's what it boils down to, your child's health. The rest is gravy. 

Feeding Tube Awareness Week - Day 3

We went out of town for my younger son's birthday this past weekend. We liked the cabin we stayed in so much, we asked the office if we could get an extra day. Since no one was coming in Sunday night, they were happy to oblige. It was great to have that extra day of rest and relaxation.

Now it's back to life as usual (which is wonderful) and back to feeding tube awareness.

Yep, today we are going to talk about reasons why kids have tubes. Let me start with the simple information first. You can't tell by looking at a child if they need a feeding tube. There is no sign on their forehead that blinks all their medical issues. So, if you were thinking of a comment that starts with "but he looks so normal" or "he looks so healthy", just go ahead and stop right there and keep that thought to yourself. The parents won't take you seriously, they will understand you don't want to get it, and their shields will go up. If you want to really grasp the situation, ask good quality questions. Also, remember, only ask those questions if you have a right to know the answers. Don't ask a random stranger in a grocery store. Their child's medical information is not your business.

Feeding Tube Awareness has developed a wonderful list of conditions, diseases, and disorders that often come hand-in-hand with a feeding tube (or at least they are very common with those diagnoses).

You can check that list out here:

Condition List - Feeding Tube Awareness

Now, I am going to get more personal. I am going to share our son's reason for needing a feeding tube. This is the diagnosis he received after years of testing, scopes, biopsies, feeding therapies, labs, and doctor visits with specialists. It took a lot of trained eyes on him to figure this out and it was exhausting.

Ready for it?

Idon'tknowthisisnewtome disease.

Yep sometimes you have a kid with a feeding tube and the doctors don't understand the mechanism of why they can't eat enough to sustain their bodies. Oh, they have medical issues. Our son HAS medical issues. None should cause him to not be able to eat and fully process his food. His tube was put in because, no matter how hard they tried to figure it out, he was failing and the point was to get him healthy and make him thrive. There comes a point that you need to start treatment even before you figure out why you need the treatment. His labs show issues. His feeding therapists can't figure it out but see the issues. His doctors can see that he can't do it. They just don't know why.

Society doesn't like that. We like names for everything, especially anything medical. But, when you live in the medical world, you quickly realize how much we don't know. I wanted to bang my head into the wall every time a doctor said "I don't know" because I knew they honestly wanted to know but didn't.

Here we are, 16 months later, and our son is doing so much better. He looks healthy BECAUSE of the tube. We are blessed to have it in our lives. I never wanted it. I fought against it. But, in the end, the doctors were right and he is healthier now. It wasn't the easy way, it wasn't giving up. It allowed his body to be healthy so we could actually work harder to get his body to do what it needs to do on it's own. A sick body can't heal many times simply because it's too sick.

Feeding Tube Awareness Week - Day 1

Welcome to FEEDING TUBE AWARENESS WEEK 2016! 

That's right, for the next 7 days I will be posting about all things tubie. I will have funnies, hard to hear, and everything in between. This will be a chance for you to get to know our family and our journey with a feeding tube. So, if you have a question you would like to ask, please feel free to do so in the comments and I will promise to answer it for you. No question is silly, no question is stupid, ask away. 

I would like to get started with the most common questions we are asked or things said to us. MOST of the time these aren't asked out of honest care and sincerity (well, the first one is, but the rest aren't). But, I will still give them attention because, as I said, there are no dumb questions. 

• "When is he getting the tube out" - This is the number 1 most common question most tubies get asked. My answer is what most people answer, I don't know. His doctors don't know. No one knows. When he can thrive and survive without his tube, he will have it out. But, that means he has to thrive and survive for at least a year without it before we remove it. This could be a few years from now, it could be when he's a young adult, it could be never. So, please don't be offended when we say we don't know. We honestly don't know. 
• "Just don't feed him eventually he will get hungry" - I always laugh at this one. Just don't feed him (aka starve him to death) and he will get hungry (even though I know nothing about his medical issues and don't know that his body doesn't feel hunger the way our bodies do so, no, he won't get hungry. Please, before you say something like this to a tubie parent, think about what they are hearing. They hear, "you don't know what you are doing and have medically abused your child because he missed one single meal". Just to let you know, most of our kids would very much starve before they would eat. My son's body was doing just that. 
• "Just put food in his mouth" - Tell ya what, you put food in his mouth. I will hand you the rag you will need when he either spits it back out at you or, if he attempts to eat it when he can't, the multiple rags you will need when he throws up on you. You let me know how that works for you and then get back to me about "just put(ting) food in his mouth". LOL. 
• "You just chose the easy route" - Most of these I can laugh about and do. This one makes me angry. No, I didn't choose the easy route. No, my doctor didn't choose the easy route. In fact, this was the hardest decision we ever made as parents. It involved years of testing, therapy to help him eat, scopes to see why he wasn't eating, doctor visit after doctor visit to work through med changes and new ideas. It took my GI looking me right in the eye saying, "it is time, you have done all you can do to keep him from this tube". I walked out crying that day. I felt like a failure. I knew, logically, I had done everything I could do. We had used multiple therapists and therapies, too many meds to list, and had done everything our doctor asked of us. It wasn't enough because it wasn't what his body needed. Oh, and lest you think it's easy to tube feed, think about. How easy is it to make your child a sandwich, put a side of fruit, a few carrot sticks, and maybe some chips on a plate? Now, do all of that, but make sure you measure and weigh every single ingredient as you put it on the plate. Also, make sure to keep out all allergens. Add in that you will need to know EXACTLY how much of that food he ate so you can put it in his daily calorie journal so you know how much he's missing each meal. Then, you have to compensate by blending just the right mix of foods in your blender, then spend 30 minutes slowly hand squeezing it into his tube. Add in that you just dirtied twice the amount of dishes, pots, pans, etc as the typical person does in a meal since you made two meals in one, and you realize once you get up from tube feeding your child you have to wash all of those dishes. Oh, and you have to do it all while still caring for your tube fed child's other needs, making sure to stay on top of their meds, caring for any other children you are blessed with, caring for your home, caring for your spouse, and more. 
• "Is that REALLY necessary" - Yes. It is. 
• "Can't you do that in the bathroom or car" - No, I can't. YOU go eat in the bathroom stall or sitting in a car when it's 105 degrees outside or 22 degrees outside if this bothers you. 
• "That's gross" (talking about the simple presence of the tube on his stomach which you saw simply because you looked over just as he raise his hands high enough to show a bit of his belly) - No, it's not. But, please, while you are smacking your food/gum with your mouth wide open, spitting while you talk with your mouth full, tell me how this tiny near clear, plastic piece on his belly disgusts you. 

OK, now that that's over with, let's move on to actual awareness for those who are concerned and care about others (Which I know will mean all of my readers). I will be back with more on this topic as the week goes on.