A boy, a ball and a backpack. (a g-tube update of sorts)

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Corrigan has had his feeding tube for four full years now and it is now as much a part of his life, and body, as the nose on his face.  Prior to the feeding tube my life revolved around teaspoons of formula at a time, every fifteen minutes a day, twenty-four hours a day. Children with his disorder often have feeding issues, possibly related to elevated levels of serotonin in the brain, but because their stability relies on very precise, calculated amounts of nutrients and fluids, a child with a Urea Cycle Disorder that refuses nutrition is at risk of decompensating quickly, possibly leading to hyperammonemia- which then can lead to brain damage, coma or death.  Scary stuff.

Also, the medicine that he takes to scrub ammonia from his system relies heavily on urination to help excrete the scavenged ammonia, a clear pathway out of the body.  In order to encourage that process, children with UCD’s are often prescribed large daily amounts of fluids, which we were having a terrible time meeting when he began refusing things by mouth.   Before the g-tube, in order to keep him stable and out of the hospital, I would follow him around with 10ml syringes full of formula, squirting tiny bits into the back corner of his mouth and then holding his mouth shut until he swallowed.  That sounds terrible doesn’t it? It was. It truly was.  But I was desperate and eventually our only choice was enteral feeding.

I was so frightened before the procedure, but I had no reason to be.  I spent a lot of time talking with experienced tubie moms in order to understand our new life, and the hospital did a great job training us before they sent us home.  The surgery went smoothly, we have had no major infections or issues, and while I was naive and had hoped that he would be able to be “reasoned” with by this age (6) and be tubie-free, I don’t dwell too much on when it will be removed.  The tube is how my son receives his nutrition, it quite literally saves his life each and every day, so I am not in any hurry to upset the apple cart.   I love that little piece of plastic and silicone more than coffee, and that’s saying something!

We have had some incidents when the g-tube button was accidentally yanked from his stomach, and that wasn’t any fun at all, but we do all of the changes at home (aside from one run to the ER when he pulled it out in the middle of the night and the hole closed up a bit by the time I realized.  They were able to dilate the stoma and get a new tube in quickly) and the last three changes Corrigan has laid still and waited while I put a new one in, without any tears or fuss.  This is a huge change from the first few years when button changes left us sweaty and in tears.

He is tube-fed four times a day, for about 35 minutes per feed.  That’s it! He wears his feeding pump in a special backpack and aside from the few minutes it takes to hook him up and get everything started, it does not impact his day in any way.  At school he is tube fed right before lunch and after the nurse hooks him up, and starts the pump, he returns to his class and participates in all activities and lessons as normal until his feed ends.  His school has had many tube fed children over the years but Corrigan is the first child that has come in with a backpack and the ability to move freely around the school while receiving his vital nutrition.  This sure beats waiting in the nurse’s office while the pumps does its thing, and missing out on crucial learning and play time!

Corrigan swims, runs, climbs and plays sports while having a g-tube.  He knows how to move and climb in ways that protect his Mic-Key button, he even rolls around on his stomach without any problems. Last weekend we went to a picnic where I am sure most people had never seen a child with a feeding tube, but everyone was kind, though I am sure their natural reaction was one of pity. I recognize it in their eyes, but it doesn’t take long for them to notice that he runs and plays just like any other little boy, and that there is no need to pity him, or our family.

I snapped these photos while at the picnic, my sweet little boy doing what many little boys enjoy doing, playing fetch with a dog, while simultaneously receiving his dinner through his tubie and wearing his backpack.  In fact, this scene is so normal to me that I didn’t even notice the backpack when I was editing the photos. All I saw were a boy and a dog on a lovely summer’s evening and I think that by the the time we left for home, that is all who were at the picnic saw too.
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I have blogged about Corrigan’s feeding tube many times, including our decision making process and the actual hospitalization. Feel free to check out these older posts. Lots of photos and details:

Where I wrestled with the decision

Countdown to G-tube and explaining our decision

Procedure Day

After the g-tube procedure

The 1st time we ventured out with the G-tube

Transition from PEG to Mic-Key button

Thank God for g-tubes!

 

 

13 thoughts on “A boy, a ball and a backpack. (a g-tube update of sorts)

  1. Our son has a gtube also since age 2. He is now 8. His condition is called homocystinurea which is a metabolic, genetic disorder where you are unable to break down protein.. It is a serious condition, but outwardly, he looks happy and healthy. I hope that one day he can eat more food by mouth. But for now, he says that most food “tastes funny in my mouth.” Thanks so much for linking up on Kelly’s Korner. I enjoyed reading your story;) Blessings!

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    • Thank you for reading and commenting, Kathy! Kelly’s post today sent over a ton of visitors but none left any words, I always appreciate those who take time to leave something behind! Do you have a blog? I’d love to read more, it sounds like our children are living with similar disorders, as Corrigan has difficulties removing the waste product of protein metabolism (nitrogen to urea) and instead of his liver completing the cycle, the nitrogen converts to ammonia. He is on a very protein-restricted diet. Thank you again for stopping by!

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  2. Hi! Stopping by from Kelly’s Korner. Your entry caught my eye because my now 2 year old son was tested for every metabolic disorder under the sun as an infant. He had a liver disorder that could have been caused by a large number of things but thankfully all of the metabolic testing came up negative. He is now healthy and his liver enzymes are finally in the normal range. We go back in 6 months for one more blood draw to make sure everything is still OK.

    I am also a speech language pathologist and have a lot of experience working on the oral feeding aspect of kids with feeding tubes. I am so glad to hear that his tube has been a positive experience. It is no way for anybody to live life constantly forcing oral eating/drinking. I always try to tell parents that getting a tube should not be looked at as defeat. It can greatly enhance quality of life!

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    • Natalie, exactly! His quality of life got so much better once we had the tube put in! So much of life and socialization revolves around eating and Corrigan kind of has a double negative in that 1) he has no desire to eat and 2) what he does eat has to be very carefully calculated and measured, taking away the spontaneity of the pleasure of eating, for sure. We have tried several times to encourage more oral eating, he does take a few grams by mouth each day but nothing consistent, but it stressed him out so terribly to HAVE to chew and swallow, it just isn’t worth it right now. Thank you for commenting! I am glad that everything seems to be going in the right direction for your son and his liver!!!

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  3. A blog reader just left me a link to this post. My son will be four next month and has been tubefed for the past two years. We too hope for a day when he can be “reasoned with” and we will be tube free. He has a heart defect and he used to have a major artery compressing his esophagus (which is why we had the tube place). He had surgery to correct that a year and and a half ago, but still cannot maintain or grow without tube feeding.I will be following your blog from now it. It is so nice to hear from another tubie mom.

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    • Hello Renee! thank you for commenting, I just clicked through to your blog to find your name and I cannot wait to dive in and learn more about your large and beautiful family! Thank you for following along, I will do that same with your blog as well!

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  4. What beautiful pictures of a boy and his dog! It sounds like the feeding tube was a life saver! It must be making life so much easier for you. My daughter goes on eating and drinking strikes when she’s sick and that worry me sometimes. During those times her urine gets so yellow it scares me!

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    • Sylvia, eating strikes are the worst! They are normal for a lot of kids, but for mine that would mean really bad news fast. The tube is quite the lifesaver (literally) and you are right, it sure does make things easier! Thank you for stopping by and commenting!

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  5. Oh those pictures are absolutely lovely! I am glad to read you know you made the right decision. He can go and play while getting nutrition – and who said boys can’t multi-task! I’m stopping by from Love That Max

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  6. Hi! Thank you for sharing your story. My son has had his button for 3 years now. I believe it was the best decision we have ever made for him! Hopefully, we will figure out why he won’t eat soon, but until we do, I am so very thankful for his button. It allows him to be a typical 6 year old.

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    • Hi Maegan ( I love the way your name is spelled! ) thank you for sharing, makes me happy to hear that others are as happy with the g-tube as we are. It really does free them up to be as “typical” as possible, which is what I want more than anything for my boy. I think that this might be the summer he swims without wearing a shirt. He doesn’t realize he is different (the tubie) but he does hate a wet shirt, who cares what other people think, it’s time to be out and proud!

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