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To G-Tube or not to G-Tube

g-tubeOne of our closest online CF friends is struggling with a decision about whether or not to opt for a g-tube for her sweet baby boy. He started out life quite chunky but has reduced to the 5th percentile now that he’s around a year old. She’s asked for wisdom with the decision, so I offered my 2 cents, which she has since insisted that I give… so here it is for open discussion.

Make no mistake about it, a g-tube is a huge deal. I’m not sure if my parents ever struggled with that option for me or not, but I do remember a time when they were really being pushed by the doctors to do nightly NG tube feedings, but I have a serious gag reflex and have puked every time I receive one. Sorta defeats the benefits right off the bat when you lose your dinner before bed, in your bed.

In my opinion, there has to be an ever-present consideration for emotional well-being that ranks just below health well-being. Beautiful has told me more than a few times to stop thinking about my bad parts about childhood related to school, the other kids, and how being the odd one out most of my life shaped a significant part of my personality. I was, simply put, different. Kids are both the meanest monsters alive and the sweetest creatures created, all in the same package. They both pick on anything they can see that is different while ignoring many obvious handicaps. To me, adhering to a medical textbook’s guidelines of what is healthy at the expense of childhood development is a potentially more severe problem waiting to happen than anything associated with being a low weight, as much of a pro-weight guy as I am. Now for some explaining on my part.

I was a chubby little guy as a toddler, despite my big meconium ileus surgery that had me on super-weak formula for months. I’m pretty sure my mom still has the growth charts of my height and weight percentiles from the early years, but I remember myself being in the 5th percentile on height for as far back as I can remember. I was in a class of 72 kids and only 2 others were close to my height, but both were still taller by a smidge.

When I wanted to play midget football (4th-6th grades), I had to wait until the 6th grade to meet the minimum weight of 60lbs while we had 4th graders going on diets to make the 120lb max at weigh-in. That one year was one of my greatest personal achievements that no one can take away from me, but a g-tube very well may have. I played 4 years of baseball, a year of track, tag (often turned into tackle) football every day at recess, and had a bass drum strapped to my chest and stomach for marching band for 3 years.

Those where the things that kept me healthy.

Now… granted, perhaps the new g-tube procedure and setup is less readily detectable by classmates, but I would suspect that parents would still have to be more cautious with that than without. I know I limit some of my activities due to my port (like how much I’d enjoy doing martial arts for exercise), and any locker room situation would have been the end of me. I was already the last to develop in my class, so having something medical like that would have been too much.

I may have been a lightweight, but I had lung functions in the 80s up through graduation, ran like greased lightning, and had an appetite that could put a small country out on the streets. While there is a lot to be said for the value of having extra weight to ward off infections, being that active is also a huge plus. Heck, I could hold a  12-16 second note at full blast in choir in the 10th grade, so pardon me if I’m a little passionate about doctors being so quick to permanently alter someone’s life over something so temporary.

Dad has said that the method they used to get me to eat was to feed me lots of pizza and beef: two things that I really scarfed down. Anyone who is passionate enough about their kid’s health to opt for a g-tube is a great candidate for trying oral options longer, especially as long as everything else is doing great.

My 2 cents wraps up with my premise that gaining weight most likely would not have been able to keep me much healthier than I already was with my activity level and would have likely only increased the possibility of being teased and significantly restricted my physical activities, thus decreasing my lung function. In the end, at this point in his life, you’re making a decision for him that will have long-term ramifications, even if the g-tube is a short-term solution after all. Unlike those parents who give their kids the dumbest names on earth, you need to balance what is good for him and what will harm him non-medically, too.

Here is what I told her, though:

You will do what is best for him and knowing that will give you peace with your decision.

I stand by that as advice for fully-informed parents who truly have their kids’ best interest (not those screwed up parents who get their kids taken away).

Comments

  1. Since he’s only 1 year old, social interaction with his peers isn’t yet a big factor, but it will be before you know it.

    Still, I guess I’d be reluctant to go to use G-tube because I’ve read that going back to a normal diet can be difficult. I’d think that it would be extra hard for a toddler who can’t really understand what’s going on.

    Both G-tubes and NG-tubes have a bit of risk involved in the insertion process too. So, even though it’s a royal pain in the patootie, I’d keep trying to find stuff he likes to eat. His taste horizons will probably expand over time.

  2. I’m a dad of a little girl with CF, and she’s pretty consistently around the 25% of her age. We dipped below 5% a few times in her life, but I’m in the Navy, and those times were mostly related to moving, as I recall. Anyway, I can’t say that I know what it’s like to be faced with this decision, so take my advice only as far as you want to.

    You are the parents of this CF child. You do what you think is right. It’s way too early in life to be sheltering him from the reality of CF. If you and the doctors think he needs the tube, get the tube. Period.

    I’m the kind of dad that doesn’t give a rat’s left foot about what others think of my kids, and I tell my kids that. I get to decide what I think of them, and when my kids have been picked on, I tell my kids exactly how I feel about the person picking on them. Someday my daughter will have to explain enzymes, chest PT, coughing, and a host of other issues. The port, tube, etc, is part of that life. When it comes to social life, screw it. You’re saving your child. Besides, we’re all going to scar our children some. No way around that. Better in the end to have had my child alive than dead or wasting away.

    I am passionate about this sort of thing…that is parents doing what they feel is right. My daughter has never had to consider the tube, so if this advice doesn’t work for you, don’t follow it. Especially considering how strong a case the fatboy makes, you may want to ignore what I have said. In the end, be strong about the decision you make.

  3. Breckgamel says:

    The tube decision was made for us shortly after Bennett was born. But I am thankful to have it. It has provided us such security knowing we have ways to keep Bennett hydrated without having to put him in the hospital and ways to provide him nutrition even when he doesn’t want to eat. The tube offers us new challenges. But if I were to do it over again, I’d absolutely choose it again. There are some great resources for those with tubes to help make life more normal. I pray that Bennett won’t always have to be dependent on the tube. But I choose not to worry about the years in the future and make decisions based on the information I have now. Thanks for posting on this topic! It’s great to hear all sorts of opinions! I respect your thoughts!

    • And I yours, so thanks for sharing. Certainly there are situations where a g-tube is absolutely necessary, and I believe your situation with him is one of them, no doubts about it, no more than my eventual decision to get my port… at the right time.

  4. First, I agree that you should listen to everyone’s advice and then discard it and do what your heart tells you.
    My son will 8 next month and we decided after a long time to get his g-tube placed when he was a little over two. It was not an easy choice, but our son was not even on the growth charts at any point in his life. He was not a good eater and we have later learned this is due to his REALLY BAD sinus issues.
    At the point of the surgery, we questioned ourselves about did we do the right thing. He was uncomfortable in the hospital and I wanted to punch the RT who came in to do his therapies and insisted on rocking him side to side (over his surgery site) while she held the mask to my screaming son’s face. (At this point, he didn’t do nebulizers at home.) I calmly told her to put down the nebulizer and leave the room, that I would finish. Then when we got home, we had leaks and messes. But at that first clinic visit post g-tube, he had gained weight and was on the charts. It was the greatest feeling.
    Now lots of people will tell you that you should try what works food wise and keep at it. And that works for some people, but not us. For me, the g-tube was a relief, because I didn’t have to FORCE my son to eat and now he eats. There are days when he knows he needs to eat, but is literally too tired or wants to get to soccer, so he will ask if I can bolus a can. He is still tube fed overnight. He doesn’t eat breakfast, but he gets to leave his class and go have a snack in one of the principals office in the morning. Then he eats lunch at school, an afternoon snack, dinner, and an evening snack. When you realize how many calories an active CF kid in 2nd grade needs to stay healthy, it can overwhelm you. For us, we don’t worry. He has stayed in the 75% for BMI and on the CF side he has been relatively healthy.
    As for the other health issues, they will probably take longer. As I said, he sees ENT for sinus problems, Endocrine for CFRD, Rheumotology for leg pains, the Sleep Pulmonologist, and GI.
    On another CF site, one mom was worried about the stigma about the g-tube later in life. I think because my son has had his so long, it is not a big deal to him. He knows he has it and he is even going to play football this fall. (I am an expert at changing it and will carry a spare and hope I never have to use it!) When he was around 4 and we were on vacation at a pool, an older boy was staring. I thought my older, non CF son was going to do something to this boy, but my CFer said, “What are you looking at? That’s where my parents blow me up at night, I am Pinochio!” The older boy didn’t know what to say and my boys went back to playing. Now I buy him (and his brother) rash guard shirts in larger than needed size, but that is mainly because they are both so pale like their dad. There maybe more issues down the road, but we’ll deal with those as they come. Most people don’t know about the tube and he knows that he has it because of the CF.
    Sorry that I rambled. I hope this helps, but as we all know every CFer is different and what works for one will not work for another.

  5. Chronic Mom says:

    Great post, very thought provoking. It took our doc three years to convince my husband and I that our daughter would thrive with a g-tube. We really weighed all options (pun intended). While we thought about it, her weight and growth flat-lined and her lung functions suffered. She had very little desire to eat much of anything. Plain rice cakes were one of her favorite foods, so we really had a challenge getting the calories in.

    I’m pretty sure the g-tube has made her life easier overall by giving her one less thing to obsess over. Yes, g-tubes can be a lot of work and a definite expense, but our daughter plays varsity soccer for her high school and is planning a trip to Europe in a few years. Without the calories she gets at night, there’s no way she’d be healthy enough to even consider these activities. (She probably won’t bother with the g-tube during the trip to Europe, but it’s nice to have the option if she needs it.)

    She has two younger brothers, one with and one without CF. The bro with CF got his g-tube when he was about 10, and while it’s no picnic, it does make up for his near complete lack of appetite. He also plays all kinds of sports and runs the calories right off just as soon as they go in. He currently gets 1000 calories by g-tube at night and he’s still really thin. For us, in both cases, the g-tube was nearly a no-brainer.

    Anyone considering a g-tube should definitely do a lot of reading and talking with lots of different folks to get as much information as possible. As the others have said, every person with CF is a unique individual and every family has its own dynamic.

    Good luck to you!

  6. claudia, my hero!! says:

    I have recently been put in a place where there is no other choice than the g tube…they tried to put it in a year and half ago and i went to sick kids for a second opinion and they said don’t do it. I thought , well , they are the experts, right?
    So that brings us to now, weight and bmi constantly decreasing, more lung infections than ever before….it is time to do it.
    My daughter is not afraid, she is my hero, she makes me stronger and i pray that this will be our answer to our problems at this point.
    We have a waiting period in northern ontario of approximately 6 months so i guess in 6 months i will post again to speek of  the outcome.