I’ve been harboring a little secret over here for the last few weeks: we’ve been attempting to wean Apollo from his g-tube. He had the tube placed 22 months ago at the age of 22 months.
Six weeks after his double aortic arch division, Apollo was back in the hospital. His breathing was worse and he still couldn’t eat. I was so desperate at this point that I told Chuck I wasn’t leaving the hospital until they could tell me why he couldn’t eat. A simple Upper GI gave us our answer. This is what Apollo’s esophagus looked like after his surgery:
Every piece of food he ate had to be pushed past this narrowing. To make matters worse, forcing the food past the narrowing pushed on his airway. It was nearly impossible for him to eat and breathe at the same time and he was at extreme risk of choking.
We were told at the time that it was “too risky” to attempt fixing, so the decision to place the g-tube was an easy one.
Apollo had a second surgery to repair his double aortic arch in Texas on October 30, 2012. The surgeon in Texas was able to successfully remove the vascular structure (diverticulum) and allow his esophagus to “hang free”. The surgeon did tell us that since Apollo had developed “psychological issues” around eating, he guessed it could take up to six months for him to be tube-free. It has now been 17 months since his second surgery and he is still dependent on the G-tube.
Apollo was cleared for dairy months ago (he had been dairy-free for a suspected milk allergy since he was ten months old). He is no longer at risk of choking to death if he eats hard or crunchy food. He has learned to eat (and love) pizza. He enjoys ice cream, potato chips, Chicken McNuggets and fries. He eats peanut M&M’s and olives on a regular basis. We let Apollo eat whatever he wants, whenever he wants. It’s all part of the trade-off (right now) for eating by mouth instead of tube. If Apollo asks for potato chips and ice cream for breakfast, we are thrilled!
Apollo’s doctors vary on what they think we should do about his tube. His pulmonologist says he needs the extra calories. His GI doctor no longer sees him (he says he doesn’t have any GI issues). His cardiologist doesn’t care either way. His ENT doesn’t seem to have an opinion. His regular doctor has only had one other paitient with a g-tube. He was in group feeding therapy for about five months. We have taken him to be evaluated for his eating and were told he has all of the mechanics down just fine, so they can’t help. None of his doctors can tell us why he is tube fed at this point, so we decided to attempt a wean.
Some of his doctors want us to increase his tube calories so he’ll grow, others suggest we give him less so he’ll have an appetite during the day. One has suggested we get rid of it all together. There is no consenus and none of these doctors get together and discuss the issue, so it really is left up to us.
I’m not going to mention specific weights here. Every time I do, I get people trying to encourage me by telling me about their child that weighs the same or less than Apollo. But the thing is, it isn’t just about weight. It’s about growth and Apollo’s relative weight. Has he grown? Or is he staying the same? And in Apollo’s case, we need him to grow because his trachea has been partially crushed from his vascular ring, and the doctors have told us he needs to grow before his trachea stiffens permanently (tracheas are soft in babies and naturally become firmer as they grow).
For three weeks we didn’t tube feed Apollo at all and his weight dipped slightly, then leveled out. He was very hungry during the day and ate with gusto. He consumed much more food by mouth…but didn’t gain any weight. Not an ounce. We are now five weeks past the initial wean attempt and he still hasn’t gained any weight. In consultation with his doctor, we have now added in one can of formula per night (240 MLS) and he still hasn’t gained any weight. We are giving it until the end of the month and if he still hasn’t gained, we will increase his calories through the tube.
According to my records, he weighs 4-8 ounces (depending on the day) more than he did in December (the doctor wants him to gain 8 ounces per month). His BMI is very low and in the underweight category.
So there you have it. I am happy that he is eating more and maintaining his weight but disappointed that he wasn’t able to gain any weight without supplementation.
Owen didn’t gain any weight for almost a year during his tube wean. That worked for us as long as he didn’t lose because he was at a healthy weight to start with and didn’t have the other issues Apollo has. I’ve been told that eating by mouth, especially for someone who hasn’t done it before, uses up a lot of the calories taken in. It takes most kids a while to actually gain after a tube wean.
Yes, but as you say, Owen has *never* been skinny! And he isn’t burning extra calories just getting through his day.
Brother. And I thought I had problems when one of my kids wouldn’t eat spaghetti if there was any sauce on it. Though I have noticed over the years that small kids really don’t like foods that are mixed together, like in casseroles etc.
At least Apollo is making an attempt at eating, that’s a good first step. Sure wish I had some ‘helpful’ hints for you but I will keep him in my prayers.
Peg- we look forward to the day when he is “just” a picky eater! Even if he *never* gets there (and I’m sure he will) at least he is eating more. I follow quite a few tubies on Instagram, and several have CF and eat tons orally but still need the supplemental calories (even as adults). At least we tried and know his body is not yet ready to fully wean.
Awesome. I’ve a friend who weaned her toddler ( a two year old) and he didn’t gain weight for a year either, but he didn’t loose any, so that was good. A year later, he started to slowly gain.
Thanks for sharing, T.W. Apollo doesn’t have any extra fat on him at all, he has a *very* low BMI, which simply means he can’t afford to not gain weight for six months or a year. If he grew taller (at his current weight) he would become skeletal. He also has the tracheal issue (he needs to grow so *it* grows).
I’ve heard to wait until 6 months after the last time the tube was used to remove it. (That way if something happened you wouldn’t have to undergo another operation to have a new one placed). I think the slow weaning you all are doing makes sense! (Obviously not medical advice here).
What a long haul you’ve had! But even if the kid’s skinny, he looks happy and he looks healthy. If your gut feeling is he’s doing fine, I’d stick with that.
I don’t mind skinny, I make lean kiddos, but he was pretty miserable with no supplementation at all.
Good for him for trying!! Tell him we are proud of him!
Slow and steady wins the race!
We will pray for continued progress and a growth spurt!
Thank you 🙂
Tube stuff is so tricky and so individual. A thousand and one things seem to impact on it! My tubie will SOMETIMES lick food off a 60ml syringe plunger. Sometimes. And will sometimes let smoothie in a cup touch her lips, and then sometimes lick it off or sometimes wear it as face paint! If he will drink smoothies you can sneak in things like coconut oil and whey powder to help weight gain, but I am all too familiar with the two steps forward, one step back, stabbing in the dark nature of complicated kids!
My wife and I were having this very conversation tonight. We had quit giving our daughter her nutritional supplement because her eating habits had improved so much. She has gained less than a pound in 7 months and her height (which was always higher on the growth charts) has dropped off. It is so discouraging, and frankly frightening, when your child requires formula at 2.5 in order to grow.
We’re battling our second round with FTT and a GI consult who told us there was nothing wrong….that she has a terrific diet except that she eats too much fruit….so I’m supposed to cut out the one thing the child loves….and it hasn’t done a thing to help her GI symptoms.
We’re at the place of deciding to add back in the supplement or not. And I’m really torn about what the “right” thing to do is. Her lack of growth clearly impacts her gross motor delay and some of her physical struggles.
I offer sympathy and prayers.
That’s tough, Samantha, thanks for sharing with me. It is so hard…we want them to be done with supplements…and yet we want them to grow and thrive too. Apollo definitely feels better with the formula at night, so I guess for now we find the balance between giving him enough to thrive yet not so much he doesn’t need to eat orally.
Our daughter is 10 and we are once again attempting a tube wean. I think may work this time. We have told by her specialists and her pediatrician to never remove the tube until you haven’t used it even once for a year.
Yup. I just swapped his Mic-key out yesterday. I firmly believe a parent shouldn’t have to do that to their own child. I’m not squeamish at all, but I still don’t want to see the inside of my own son’s stomach…and then shove a medical device in there 🙁
What a sticky situation. I wish someone, somewhere could give you a play by play of how it will all go down .. and that Apollo’s little body would play by those rules!
You are an amazing mom! Keep up the good work!
Keep up the good work you will get there.
My foster kids who come super skinny and with texture issues have often been won over by Greek yogurt. No fruity chunks though. Like Zoi brand-Honey flavor. 320 calories per cup. When I’m desperate for calories for a kiddo I turn to this.
Good luck.