Hi again! It is Anjeanette and I’m back for a little 101 on tube feeding the way we do it. There are all kinds of different situations for tube feeding but this is our way. Not any one way is right for everyone. Something that I think we all do is look at people that are different. I know for me personally, I wonder what it is like.
When my son had his ng-tube, things were very obvious that he was different.
I mean, he had a tube hanging out of his nose for Heaven’s sake! How strange is that? I look at these pictures and it is like a whole other lifetime ago. The tube went down his shirt and we taped it up inside his shirt so it didn’t yank out of his nose.
Now he has a g-tube and really, I often forget that he is different. We have a lifestyle difference, but looking at my son, you would not know that he is different now. That is sometimes the hardest part about this disease. You can’t always see that he is sick. He looks normal. He does normal things. But food and eating is a whole other story for him.
We are in the process of finding the foods he is allergic to and avoiding them. Unfortunately, he can’t get enough nutrition from his “safe foods” so he is still fed supplementally through his g-tube in his belly.
If he is getting fed when he is sleeping or watching TV, we put his feeding pump on his IV pole for the feeding. I made a little hanging bag to keep our supplies at hand for feedings. We can move the IV pole to any place in the house we need it. It isn’t as sturdy as an IV pole in a hospital, but it does the job just fine.
One icky thing about g-tubes is around the hole or stoma in his belly, he gets granulation tissue. It is basically his body rejecting a piece of plastic in it. The granulation tissue can bleed and get infected and hurt. This is normal granulation tissue. Blech.
My son is 5 and he bumps his button (g-tube) a lot. It sometimes leaks too. But it is also nice to have sometimes. Right now, as I type this, my son isn’t feeling well. He has had a fever for a good day now and won’t eat or drink. We can run some Pedialite through his g-tube while he is sleeping. With a child sans a g-tube, you would have to try to coax them to drink the Pedialite. Sounds silly, I know, but a g-tube isn’t all bad. And actually for us, it is the only way to keep him from being sick all the time. He still does get sick. It is hard because we don’t always know why he is sick. Was it something he ate? Was it something in the environment that he breathed in? Was it a regular bug? We can never be sure.
Anyway, here is our basic set up for the feeding tube feed. We mix up the formula just the same way you would mix up baby formula. Remember how baby formula stinks? Well this stuff. Oh boy! This stuff makes baby formula smell like roses. Nasty.
We put the formula into a bag with a tube.
Part of the tubing slips into the feeding pump like this.
We are lucky to have this teeny back pack for day feedings. The whole assembly with the bag, tubing and pump fit nicely into the back pack. They are made specially for this purpose. There are holes in the sides of the bag for the tubing to go through.
There is a special pocket in the front of the back pack for the pump and to give you easy access to the buttons on the pump.
We zip up the bag and attach the tubing to his button.
We tape up the tubing to his belly because if he got snagged on something, the whole button could rip out. Ouch. That has only almost happened once.
If you look carefully, you can see the white tube coming out of the bag and under his shirt. The pump we have is quite light weight and fairly quiet. We set the pump to force the formula through it at a certain rate. He can handle a faster rate with his g-tube than he could with his ng-tube.
He can wear the backpack anywhere and you wouldn’t really know he was getting a full belly right that moment.
He has a Mini ONE button which doesn’t stick out as far as some buttons do. There is a balloon that is filled with water that sits inside his stomach. There is a tube in the middle of the balloon that the formula goes through. You would have to yank really hard to pull the inflated balloon through the stoma. BUT it can happen.
With the ng-tube, we had to change it a lot more frequently. With the g-tube, we only change it every 3 months. It isn’t a fun thing to change, but it is less bad than changing the ng-tube.
Now that you know a very shortened version of a tube feeding, maybe you won’t think it is so strange after all.
Thanks for checking in. I think understanding things that may seem different makes them seem less scary or strange.
Anjeanette
When my son had his ng-tube, things were very obvious that he was different.
I mean, he had a tube hanging out of his nose for Heaven’s sake! How strange is that? I look at these pictures and it is like a whole other lifetime ago. The tube went down his shirt and we taped it up inside his shirt so it didn’t yank out of his nose.
Now he has a g-tube and really, I often forget that he is different. We have a lifestyle difference, but looking at my son, you would not know that he is different now. That is sometimes the hardest part about this disease. You can’t always see that he is sick. He looks normal. He does normal things. But food and eating is a whole other story for him.
We are in the process of finding the foods he is allergic to and avoiding them. Unfortunately, he can’t get enough nutrition from his “safe foods” so he is still fed supplementally through his g-tube in his belly.
If he is getting fed when he is sleeping or watching TV, we put his feeding pump on his IV pole for the feeding. I made a little hanging bag to keep our supplies at hand for feedings. We can move the IV pole to any place in the house we need it. It isn’t as sturdy as an IV pole in a hospital, but it does the job just fine.
One icky thing about g-tubes is around the hole or stoma in his belly, he gets granulation tissue. It is basically his body rejecting a piece of plastic in it. The granulation tissue can bleed and get infected and hurt. This is normal granulation tissue. Blech.
My son is 5 and he bumps his button (g-tube) a lot. It sometimes leaks too. But it is also nice to have sometimes. Right now, as I type this, my son isn’t feeling well. He has had a fever for a good day now and won’t eat or drink. We can run some Pedialite through his g-tube while he is sleeping. With a child sans a g-tube, you would have to try to coax them to drink the Pedialite. Sounds silly, I know, but a g-tube isn’t all bad. And actually for us, it is the only way to keep him from being sick all the time. He still does get sick. It is hard because we don’t always know why he is sick. Was it something he ate? Was it something in the environment that he breathed in? Was it a regular bug? We can never be sure.
Anyway, here is our basic set up for the feeding tube feed. We mix up the formula just the same way you would mix up baby formula. Remember how baby formula stinks? Well this stuff. Oh boy! This stuff makes baby formula smell like roses. Nasty.
We put the formula into a bag with a tube.
Part of the tubing slips into the feeding pump like this.
We are lucky to have this teeny back pack for day feedings. The whole assembly with the bag, tubing and pump fit nicely into the back pack. They are made specially for this purpose. There are holes in the sides of the bag for the tubing to go through.
There is a special pocket in the front of the back pack for the pump and to give you easy access to the buttons on the pump.
We zip up the bag and attach the tubing to his button.
We tape up the tubing to his belly because if he got snagged on something, the whole button could rip out. Ouch. That has only almost happened once.
If you look carefully, you can see the white tube coming out of the bag and under his shirt. The pump we have is quite light weight and fairly quiet. We set the pump to force the formula through it at a certain rate. He can handle a faster rate with his g-tube than he could with his ng-tube.
He can wear the backpack anywhere and you wouldn’t really know he was getting a full belly right that moment.
He has a Mini ONE button which doesn’t stick out as far as some buttons do. There is a balloon that is filled with water that sits inside his stomach. There is a tube in the middle of the balloon that the formula goes through. You would have to yank really hard to pull the inflated balloon through the stoma. BUT it can happen.
With the ng-tube, we had to change it a lot more frequently. With the g-tube, we only change it every 3 months. It isn’t a fun thing to change, but it is less bad than changing the ng-tube.
Now that you know a very shortened version of a tube feeding, maybe you won’t think it is so strange after all.
Thanks for checking in. I think understanding things that may seem different makes them seem less scary or strange.
Anjeanette
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8 comments:
thank you for this post. I am a teacher in a special school here in the UK. Quite a few of our children are 'tube feb' I know some of them really don't like it. Getting them to except it can be half the battle, and it is so good that your son does. Because our students also have severe learning difficulties this can be extra hard. I taught one girl who always tried to rip it out of her stomach. many trips to hospital for us and her mum despite her wearing a body suit. bath times and swimming were a problem...
I hope and send all my love for a end for the need for your son to have to put up with this. much love
verity
xx
Forgive me because I am pregnant and hormonal but I just cried while reading this. If I could take that tube and tube feed myself so your son didnt have to, I would. You are a strong mom. God bless you.
Amanda
So glad you have this option and that the little guy can have his "wings" and still be a kid even while dealing with all these issues and tests and food trials.
WoW what a process... What a blessing your boy is and lucky to have such a loving family...
This is Rebecca here. I am so excited to be having Anjeanette posting about EE this week. Our family had never heard of it before my Nephew was diagnosed with it. Now we have many more people in our family with food allergies or special diets.
I love helping people be aware of our differences because then maybe we can all know how to better relate to and deal with people that are different than us. 3 of my Nephews have pretty serious issues that affect their lives. But you would NEVER know it by looking at any of them! They are the cutest, most handsome boys you have ever seen (as you can tell by those gorgeous pictures of my Nephew).
I am so thankful to Anjeanette for putting up those posts on this blog to help everyone understand what EE is and to become aware of it.
I am also thankful to Anjeanette because I know that my Nephew is dealing with a lot and I am thankful Anjeanette is his Mom because she fights for him and does so much to make his life easier/better!
Hugs,
Rebecca @RootsAndWingsCo
Thanks guys for the kind words. I think we could all learn a little about people that are different from us. It makes the world a better place;)
Anjeanette
Anjeanette my heart goes out to you and your son. My son also had a G-tube. The situation was different, he came home from the hospital as a 2-mo preemie with one and had to have it for a year because he did not have a suck reflex. My son also had the smaller "button". The granulation tissue is a tough issue. The way it was explained to me is the leaking causes the granulation tissue. After several months of this problem, a visiting nurse gave me a tube of Arbonne Herbal diaper rash cream and it literally cleared up the granulation tissue. It kept the area dry and not irritated. If you can get some, it is definitely worth it.
I will definitely be praying for your son and for your continued strength.
Thank you for all of these posts. I've worked with kids & adults with medical & developmental special needs but I don't think I've run across anyone with EE yet. I've had quite a few kiddos with feeding tubes and this post helped me know a little more about them. So glad they have more portable options now so your son & other kids can do regular kid stuff without being tethered to a huge stationary pump. Thanks for sharing your story!
One question based on Rebecca's comment- were you diagnosed with EE after your son was?
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