Tag Archives: gastrostomy tube

FTA Week, Day 3: Help for New Tubies

Today’s topic is “Been there, done that” where current tubies are encouraged to share advice to those who are new to tube feeding.  So, here are a few pieces of advice for anyone new to the tubie world.

First and foremost, I’d want new tubies to know YOU ARE NOT ALONE! Not only is that this year’s FTA Week theme, but it is probably the most helpful advice I can offer.  Knowing that there are others out there in your situation is one of the most helpful realizations.  I encourage new tubies/tubie parents to find local resources.  Join the Feeding Tube Awareness Foundation’s facebook page and look for others in your area.  It took me far too long to realize that finding others who understand is important for your own mental health.  As parents, we often forget to take care of ourselves because we are so busy taking care of and worrying about our children.

That brings us to the second tip, take a deep breath and take care of YOU! An over-stressed, tired, sad, scared parent is NOT helpful for a child.  Your child needs you awake and refreshed. Don’t be afraid to take a few minutes to yourself!

Third, everything IS going to be okay! Entering the tube feeding world can be extremely overwhelming, but no matter what you think, you WILL get the hang of it, you WILL learn how to do it all, you WILL be able to teach others, you WILL inspire others, you WILL become the expert! You might even come to love the tube! We certainly have.  I blogged about our list of pros and cons, take a look.

Fourth, (this one comes from Joseph) pay attention! The tube definitely takes some getting used to, so be careful to pay attention and know where the tube is at all times.  About 2 months after we came home from the hospital, Braxton was connected to the feeding pump laying on our couch.  Joseph went to sit next to him, and unknowingly sat right on the extension tubing and pulled the button completely out…balloon and all.  Braxton cried a little, and then we saw his shirt was soaked with milk.  As we moved his blanket, we realized what had happened.  The doctors told us what to do, but we still panicked.  I finally got a hold of myself, took a deep breath, and remembered what the doctor told us about putting the button in.  I deflated the balloon, softly pushed the stoma back into the hole on Braxton’s belly, slowly added water to the balloon, and then sat and hugged Braxton until he stopped crying.  We felt horrible.  After a few minutes, Braxton was just fine.  There was no blood or anything, and I think we were more scared than Braxton was.  I would add to not be so hard on yourself if it does happen.  You aren’t a bad parent, it can happen to anyone! We learn from mistakes…if you aren’t screwing it up, you aren’t learning!

Fifth, don’t be afraid to ask questions. Ask the doctors, ask other parents, send questions to FTAF.  You don’t know if you don’t ask.  Not just about tubes, but don’t be afraid to question your doctors.  If the doctor recommends a formula or procedure, don’t just say okay.  Ask why it’s necessary, what they are looking for, what your other options are, and if something doesn’t sound right don’t be afraid to challenge them on it.  YOU know YOUR child best! Always remember that YOU are the only advocate your child has, so don’t be afraid to stand up for them.

Tomorrow’s topic: “We Can All Use A Little Help” What we want friends and family to know about tube feeding, and how to be supportive.

For all Feeding Tube Awareness Week posts, click here!

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FTA Week, Day 1: Show the Love

FTA Week Flyer

FTA Week Flyer

Feeding Tube Awareness Week is here! FTA Week started 3 years ago by the Feeding Tube Awareness Foundation in hopes of raising more positive awareness about feeding tubes.  Currently half a million people in the United States REQUIRE the use of a feeding tube, and that number is expected to rise by at least 8% over the next 3 years. Notice the word REQUIRE. You may have recently heard about the latest diet trend on an episode of 20/20 that people are trying.  This diet can be very dangerous to your health and is NOT at all what feeding tubes should be used for. You may have also heard of someone you know having a feeding tube put in because they are in a coma or very elderly and no longer able to eat on their own so they have a feeding tube inserted.  What you may not know, is the increasing amount of CHILDREN who require the use of feeding tubes on a daily basis. If you are like us, then you had no Earthly idea what a feeding tube was or why it was needed until either you were faced with the decision to have one placed in your child, or until you met us.  Not only are so many people are unaware of the countless medical conditions that could require a feeding tube, but they are also unaware that children can lead perfectly “normal” lives as well.  This week I’ll be blogging daily about our experience based on the topics for the week set forth by the Feeding Tube Awareness Foundation.

Today’s topic: “Show the Love” – Share our Tubie Rockstar video and tell your story.

Each year the FTA Foundation puts together a video slideshow to kickoff FTA Week.  The slideshow stars countless “super tubies” and even tubie graduates! I now present to you the Feeding Tube Awareness Video for 2013 [and yes, a very special super tubie near and dear to our heart is in this].

OUR STORY

Many of you that have been following for a while know our story, but I will share with you a little more background specifically about why we chose to have the G-Tube placed and a little more about daily life with Braxton and his feeding tube.  [For the full background, including the other issues Braxton faced, check out our post The First Year]

Also, be sure to check out the video we made!

When Braxton was born, it was immediately apparent that something was not right when I tried to breastfeed him.  When the nurse first brought him to me, I could not get him to latch on properly. When I was finally able to get Braxton to latch on he started coughing and seemed like he was choking.  At first I thought he just wasn’t ready to eat, but the nurse was very concerned and took him to the nursery where, I later learned, they tried to formula feed him by bottle.  I was really pretty upset by this because I had my heart set on breastfeeding and no one ever asked if it was ok to give him a bottle or formula. After several failed attempts, the neonatologist reported that Braxton seemed to lack the suck-swallow-breathe reflex.  He basically was unable to coordinate drinking and breathing at the same time.

He later had a Modified Barium Swallow Study (MBSS) performed. An MBSS is a radiological procedure where a small amount of barium contrast is mixed in with formula and Braxton is then x-rayed as he drinks and a radiologist and speech therapist monitor the liquid as it goes down so they can determine where the problem is.  For Braxton, it turned out that he had a very poor suck reflex and couldn’t even swallow much, but the little that he did swallow was going in to his lungs instead of his stomach.  This is called aspiration.  Aspiration can be extremely dangerous because the lungs fill up with liquid therefore decreasing the amount of air available to breathe; it is essentially drowning.  I was devastated to miss out on the bonding experience of breastfeeding, because as long as Braxton was aspirating there was no way I could breastfeed him.  I began pumping instead because it was important to me to provide that nutrition for my son.

Braxton with the NG Tube

Braxton with the NG Tube

Once we knew Braxton was aspirating, the doctors decided that he would have a Nasogastric (NG) Tube placed and they would continue working with a feeding team in NICU to see if they could help him feed properly.  There were still several other issues that needed to be checked out so we were unsure how long his NICU stay would be, but were hopeful that he would at least feed on his own.  After 3 different attempts at feeding with a feeding team, they determined that Braxton was showing no improvement with his coordination to feed properly.  As everything else was somewhat stabilized, Braxton was able to regulate his own body temperature, his blood sugars had normalized, and he was gaining weight, although he had no clear diagnosis, there was no reason for him to remain in NICU.  The neonatologist began to talk to us about sending Braxton home and we discussed our feeding options. Our first option was to send Braxton home with the NG-Tube.  The Dr said he recommended this to patients whom he thought would only need the NG-Tube for a short period of time.  I was terrified of this option.  NG-Tube placement is absolutely critical. I was so scared to learn how to put the tube in.  You have to get the tube up the nose, down the throat and into the stomach.  There is a chance you put the tube in the lungs instead of the stomach, so there again that risk of drowning…basically, if not placed correctly I could kill my own son. Thankfully, we had another option.  Because Braxton had not shown improvement with the feeding team and he was aspirating, the doctor thought it best for him to have a Gastrostomy or G-Tube placed.  This also scared us.  Braxton would have to be put under anesthesia to surgically have the tube placed.  Here he was a week old and I already had to decide whether or not to put my son through surgery.  After much research and talking everything over with the doctor, we decided to go ahead and have the surgery.

The morning of the surgery we came in to visit Braxton before they took him away.  We held our precious son and talked to him and kissed him hoping that everything would turn out okay.  We waited and spoke to the anesthesiologist and the pedi surgeon performing the procedure and they explained everything to us.  We were told the surgery would be performed endoscopically, which meant a small camera would guide the surgeon as the tube was placed. Braxton would have a small cut underneath his belly button where a camera would be inserted.  The doctor would then cut into his abdomen and into the stomach using the camera as a guide. Once the cut was made correctly, the G-tube button was placed and then his stomach was stitched up around the button to heal over the next 2 weeks.  The procedure was actually pretty quick, but it felt like the absolute longest thing ever.  We waited in the NICU waiting room until the surgeon came up and told us that Braxton did very well during the surgery and the team would be bringing him back up for us to see.  When we finally got to see him, he was still waking up from the anesthesia, so the nurse took the time to show us the g-tube and go over the care and cleaning of the site.  Recovery time would be 2 weeks.  During the first week, the button had to stay taped down and we had to be very careful not to rotate it because it could tear the stitches.  We had to let the site close up a little so the button fit snugly.

Normally, children stay in NICU the entire 2 weeks of recovery.  The doctors let us go home after the first week.  We had a Durable Medical Equipment (DME) company bring us all of the necessary supplies and help us set up a monthly order that Braxton needed so he could feed.  They should us how to use the pump and all of the other supplies as well.  Before we were discharged, I got to “room-in” with Braxton.  I stayed overnight with him at the hospital in a private room, where I would be able to try everything out on my own.  A nurse came in periodically to check on us and see if I had any questions.  She helped me set up his first feeding and was there if I had any questions for the remaining.  That first night went pretty well, so I just waited for the ok to go home.  We were finally discharged, but we were completely overwhelmed.  Thankfully, the doctors discharged us with a home health agency who would send a nurse out to us to help monitor the recovery and make sure we learned to properly use the feeding tube.  Joseph and I learned pretty quickly how to feed Braxton, and after just a few weeks, we no longer needed the Home Health agency to come out.

Now, 19 months later, we are pros 😉 Braxton still has the G-Tube. We actually ruled out aspiration in September after he left the hospital.  We had been working with a speech therapist and she determined his coordination had improved quite a bit, so she sent us to have another MBSS done to see if it was safe to progress with oral feeding. The MBSS showed NO signs of aspiration! So we were given the green light to go ahead and feed him by mouth. He made significant progress with our Speech therapist and was drinking 4-5 ounces at every feeding and even eating pureed foods 3 times a day for about 4 months.  He developed pneumonia and was unable to keep any food down.  Because of that, Braxton developed a severe oral aversion where he did NOT want anything to eat by mouth at all.  A couple months ago we switched Braxton over to the Blenderized Diet, and he’s improved significantly.  He is keeping all of his feeds down now, and he is even eating a little bit by mouth again.  Eventually, we hope that he can have the tube removed, but for now, we are so thankful he has been able to survive because of it.  Joseph and I are both okay with Braxton having it however long he needs it, whether it’s another year or several years, whatever keeps our little boy healthy.

Day-to-day life isn’t all that different with a feeding tube.  Braxton has been able to be in daycare and all the teachers have been trained on how to feed him.  He currently receives 8 ounces of our Homemade Blended Formula 4 times a day.  Often, tube fed children do not fully understand what it means to be hungry.  They just know that they get fed no matter what.  Braxton has to stay on a schedule so that he continues to gain weight appropriately.  He never cries because he is hungry. We have had to feed him late because of a doctor’s appointment, or he had to be fasting for a procedure, and it does not phase him one bit to be without food.  If we waited for him to tell us when he is hungry, he might not ever eat.  Therefore, we keep him on a set schedule so we are certain he is eating and receiving all the nutrients he needs.  We can feed him when we are out and about, so we aren’t confined to our house just because of the tube.  Braxton is able to play and crawl and do anything any other 19 month old can do and the button doesn’t fall out or bother him is he crawls across the floor.  Initially, I was scared about him learning to crawl because I thought for sure him scooting across the floor would hurt his tummy, but it doesn’t.  When I hold him, I don’t feel the button poking me or anything.  It can be seen under his shirt, but it usually doesn’t get in the way of anything.  So, although Braxton may need a little extra help feeding, he’s just like any other kid.  🙂

Tomorrow’s topic: “It Takes a Village” All about tubie resources and support.

For all Feeding Tube Awareness posts, click here!

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Feeding Tube Awareness Week

Big sister and Brax :)

Big sister and Brax 🙂

Tomorrow kicks off Feeding Tube Awareness Week! I contacted our local news about running a story, and they invited us to come in to do a live interview in studio! Many families, like us, have no idea about tube feeding until they themselves are faced with the decision.   So, I’m thrilled to have the opportunity to share our story and help raise awareness for tube feeding. In preparation, we made a short video about our G-tube experience that we are sending the news station before our visit.  I also wanted to share it with all of you who may have always wondered, but were afraid or didn’t know how to ask about how we feed Braxton.

 

 

For all our Feeding Tube Awareness posts click here!

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G-Tubes: A Blessing and A Curse

G-Tube

This was after his hand surgery, but you can see the button and extension in the picture.

We had a lot of family and friends over this weekend and naturally, questions about Braxton arose. Nothing bad, but just makes me think more about the little miracle we have.  Braxton has had his G-Tube since he was 2 weeks old and I remember very clearly how daunting the idea was.  Now, almost 17 months later I have found so much that I love about Braxton having a G-Tube, and so much that’s not so great. We often get asked about him having his tube and how difficult it is, whether or not it bothers him, and so much more.  For us, this is “normal,” for others, it’s new territory.  Joseph has even said he hopes all our children need tubes..jokingly of course, but we’ve grown so used to it over time and have realized several advantages. Here are just a few things I’ve found I like and some that drive me nuts!!

A Blessing

  • First and foremost, medicine – have you ever tried to get a child to take medicine?! If so, you are well acquainted with the wrestling match that ensues.  If not, allow me to enlighten you… No matter how “awesome” you make it seem or how much you flavor it, any kid sees a syringe or cup full of medicine and they’re out of your sight faster than you can blink. If you’re fortunate enough to catch them, you literally have to pin them to the ground sometimes and make them take the medicine! Maybe not always, but more often than not this is how it goes down.  With the G-tube you lay him down open up the medicine port and push the medicine in followed by a little water to make sure it’s in the tummy.  No screaming, no wrestling, no tears…yay! Definitely my favorite thing – especially since Braxton has been on medicine since birth basically.
  • Set it and forget it – With the G-Tube we can feed Braxton anytime, anywhere, and on the go.  We don’t have to wait to run an errand or go to an appointment because of feeding time.  We simply hook up the pump and Braxton feeds on the way.  Actually pretty convenient. When he was younger we had continuous feeds overnight [we fed him over the pump slowly for 6-8 hours] We’d set his pump to only feed him a few milliliters at a time so that 4 ounces lasted about 4 hours. When the pump beeped that the feeding bag was empty we poured in another 4 ounces and set the pump again. From the beginning, I think this helped Braxton sleep through the night because he was constantly fed, and mommy and daddy got plenty of sleep since we were literally awake 5 minutes while we set up the 2nd feed of the night. Thankfully, we didn’t have too many sleepless nights due to feeding every 2 hours.
  • Sister can help – from the moment I found out I was pregnant Aileen was dying to be able to hold Braxton and feed him a bottle.  Once we got the tube I thought her dream would be crushed, but we found other ways she could help. I’d let her help pour the milk in the bag, and even showed her what button to push to turn the pump on and off so now can run over and turn the pump off when it starts beeping or even do it in the car while I’m driving.
  • Always eating – Braxton gets his entire feed all the time. [With the exception of the vomiting spells he was having] Braxton is on a set calorie intake so we know exactly how much he needs to be able to gain weight in a healthy way.  Some kiddos won’t eat when they aren’t feeling well and end up dehydrated. When Brax isn’t feeling well he may have bouts of vomiting, but we can always dilute the feed with pedialyte and/or run the feed a little slower to make sure he still gets it. We don’t have to adjust the feeding schedule just because he’s asleep or anything like that. He eats on time all the time.
  • Easy to learn – Sure, it was pretty scary at first and I can’t tell you how many times there were gaps of air in the tubing because I just couldn’t figure out how to set it up correctly, but it was very simple to learn and we’ve been able to easily show others how to use it without any issues.
  • We can still play. – While Braxton is eating we can still play and interact with him. Sometimes I’ll sit him in a chair with some toys in front of him on a small table and I can work with him while he eats.  No jumping or spinning, but we can still have fun. 🙂

A Curse

  • Beep, Beep! – I dream of that dang beeping sound! When the feed is finished the feeding pump will beep to let us know and we can turn it off. No big deal huh? Well, sometimes the pump beeps for no reason! It will say “No Flow” or “No Food” and the clamp on Braxton’s extension is clearly open and the bag is clearly full of formula but still it’s beeping.  Usually it’s that there is some small kink in the line, piece of food got stuck in the tubing, or the sensor has something blocking it.  There have been times that I “fix it” lay back down for bed and the SECOND I get comfortable…BEEP, BEEP, BEEP!!! Oh man, had a few nights that this went on for several hours…our pump was almost smashed with a hammer and thrown out the window!
  • Leaks – Go to pick up Braxton and his shirt is completely SOAKED! Not from spitting up, but because the extension came loose, the balloon lost water, the medicine port opened and leaked all over the floor, or the tube came loose from the extension! Talk about a big mess to clean up.
  • It pops out!! – I still remember the first time the button popped out balloon full and all. We were so scared. I quickly remembered the steps the doctor told us regarding how to put the button in, but I’d never done it before. It was either try to do it or rush to the ER 13 miles away and risk the hole closing and needing surgery again…I tried and I got the button back in just fine. Braxton cried because of course it hurt having it pulled out, but we were able to console him.  Scary for sure, but glad I figured it out.
  • Medical Supply Company  – We can’t just pick up an extra bottle or pump or bag at the grocery store. All the supplies for feeding HAVE to go through a Durable Medical Equipment (DME) company and ANY changes have to be authorized and it’s nothing that happens overnight.
  • Ball and Chain – Now that Braxton is mobile, it’s becoming increasingly challenging to get him to stay still for a feeding.  We still have the pump over 30 – 45 minutes and anyone can tell you getting a toddler to sit still more than 2 minutes is impossible.  Braxton will crawl across the room with the tubing stretched tight in the 30 seconds it takes to throw something away. We’ve had to sit him in a chair with lots of toys to try to keep him content, but I don’t think that will last much longer!
  • Clothing! – We had so many cute outfits we bought before Braxton was born that he couldn’t even wear! 😦 Anything with a zipper was out of the question because it interfered with overnight feeds, couldn’t have him connected and zipped at the same time unless of course we cut holes in the outfit.  I also have to have him in onesies as wearing plain t-shirts I’m afraid of the button getting caught on something and coming out. There is adaptive clothing available, but some of it is pretty pricey and there is plenty that works instead for now.
  • Daycare – Fortunately, we found a daycare that isn’t designated as “special needs” but is willing to work with us and learned to use the G-Tube and they’re just amazing. But finding childcare is very difficult.  The moment I mention feeding tube everyone turns us away.  Since we’ve moved I found no one in the area to care for him, so we’ve stayed at the daycare by our old house. It’s a little out of the way, but I love them and Braxton is happy there so we’re happy. I just fear moving further away…hopefully we don’t have to anytime soon.

I’m sure there are many other things I could add, but I’ll think of them later..This is simply our own experience with a G-Tube so feel free to share your own in the comments! I’d love to read some of your pros and cons of feeding tubes 🙂

 

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