Apollo Update {Tube Weaning?}

posted in: Apollo, Special Needs | 11

What to pack when your  traveling with a feeding tube

Apollo has spent the last two Wednesdays down at Seattle Children’s Hospital’s feeding clinic. Unless you’ve had a child with a feeding tube, you will probably be surprised to learn that Apollo hasn’t had a doctor overseeing his tube feedings for the past two and a half years. Three years ago a feeding tube was placed in his stomach and as soon as he switched from the PEG to a mic-key, his GI doctor signed off. From that point on, it was Chuck and I making decisions about his feedings and tube, along with our family doc (who doesn’t have another patient with a g-tube). It’s been a strange rollercoaster of a ride.

Anyway, he was referred over 18 months ago to Children’s Nutrition Clinic. Chuck to him to the first appointment last week while I was shooting a birth. That day he saw: a behavior psychologist, dietician,occupational therapist, and nurse practitioner. They talked to Chuck in-depth, watched Apollo eat and examined him. Afterward they met together and came up with a plan. Essentially, they want to rule out any physical reasons for Apollo’s inability to maintain his weight, but believe at this point his issue is a learned behavior. They believe that since habits were established back when he couldn’t physically eat he simply never learned the hunger-satiey connection. I told the doctor straight out that while I would love to get him off the feeding tube, I have sat right there before and had doctors and therapist tell he had no physical reason to not be able to eat. I’ve been told that he was just afraid to eat because he had painful reflux. I was told that repeatedly when Apollo’s esophagus looked like this:

compressed esophagus, double aortic arch, vascular ring, esophagus CT image, g-tube, tubie, tubefed, 

You don’t have to be a doctor to look at that image and realize why Apollo would be “full” after only two bites.

However, his eating has improved tremendously since this his tonsils removed last summer. It’s where we are now, and we are half hopeful and half terrified. 

What we have now is a very detailed (and tedious) plan to “regulate” his eating a bit more before we do anything more drastic. It includes eating on a schedule, tracking his food and water intake. They want us to move his nighttime feeding tube calories to daytime; after meals. And so on and so on. I won’t list it all here. At this point it is all a grand experiment anyway. I’ll post exactly what we did if it works, how’s that? At one point, the doctor asked how I was “feeling” about all this and I said, “It seems like a lot of work…” I mean, Apollo will be five in less than two weeks. Never did I dream when I was struggling to nurse my newborn who never seemed satisfied, that five years later we would still be struggling…

It seems so crazy. I mean, he’s an active, healthy looking kid. You would never pick him out of crowd as tiny, or sick or imagine he had a g-tube.

 

 

Facebook Comments

11 Responses

  1. “I mean, heโ€™s an active, healthy looking kid. You would never pick him out of crowd as tiny, or sick or imagine he had a g-tube.”

    There was a time when I suspect you couldn’t have imagined yourself typing this sentence. Hang in there.

    • bakersdozenandapolloxiv

      Yes, I know…baby steps. Thanks for the encouragement!

  2. Yup. That was exactly the goal when you chose to have the feeding tube placed. It worked! You have a healthy, active kid. Which is amazing and wonderful and awesome. I remember you had a lot of trepidation about taking that step, and I’m so glad it got the result that Apollo needed! Sometimes it’s hard to see the progress you’ve made unless you stop and look back at where you were a year ago, two years ago, three years ago. He’s made huge progress.

    You’ve got a plan. You’re starting from a good place (healthy child with adequate nutrition!). I know you can do this!

    Where is he at on sleeping these days? Is that any better?

    • bakersdozenandapolloxiv

      I know…and that is why I write about it here. I *need* to look back and see the progress we’ve made. The tube has been a huge nightmare and a huge blessing…Sleep is…okay. We just switched beds in his room (I need to blog about that) so he is needing someone with him to fall asleep and waking up in the middle of night, so its rough. Compared to a year ago when we had to keep in in bed with because of his severe apnea? Amazing…

  3. Danielle

    I am so curious to see other comments from tube families here. I have an eight year old who was a heart baby and has not had a feeding tube since he was 18 months old. Food is still a struggle for us, I think their learned behavior of associating being full with throwing up because of the tube, and constant hunger from an inability to eat, runs so deep. When my son came off his tube we did exactly what your doctors recommend, with the addition of some medicines that were meant to stimulate his hunger. We still tend to feed our child on a regimented schedule, because if left to his own devices, 90% of the time he would never decide to eat. I think it is a blessing that you have other older children to help model good eating and take some of the scrutiny off of him; for our only child, he only had us to look to as examples. I wish you as much ease in this transition as possible. When it is hard, do not feel alone, there are so many of us out there who understand what you are going through. Sending love and prayers.

    • bakersdozenandapolloxiv

      Oh Danielle, that is my big fear! As much as I want to be done with the tube, I am TERRIFIED of going back to dark days of not being able to feed him. I mean, logically, he can eat now, so we won’t go back to that place…but it was so awful. I swear I have PTSD from it. I have read most doctor’s recommend keeping the tube for 6 months *after* you quit using it. Did you do that?

      • Danielle

        My son had an NG tube; we kept the supplies for a good year after we stopped using it, and the formula stash we had for a while until it needed to be used before it expired. My husband and I have PTSD for sure! Our son is an only child which I think has been much worse for him with regard to eating; Apollo has an instant community of good eaters around the table with him. Whatever happens, trust your instincts, you know more about Apollo and what he needs than anyone else. For us it is still a struggle to determine what is good eating and what isn’t. Our son is so skinny and has no apparent appetite; but he is on the charts, and had he not been a heart baby, we probably would just think he was a normal skinny kid who was not that into eating.

        We also have mandatory dessert and milk each night, for that extra boost of calories . . .

        Wishing you the best of luck. Sending love and prayers.

  4. I will be praying for all of you. Success would be such a gift to your little guy. While I do not have a child with a medical issue I do have one that is very picky – sensory issues etc – and know on a small scale that difficultly with food and weight gain is stressful and emotional. He is 50% for height and 10% for weight (10 yr check up) and that is with a 7lb weight gain over the last year. I practically jumped up and down when the dr said he had gained 7lbs. In recent years it’s been 2 or 3 a year.

    • bakersdozenandapolloxiv

      Well, we are moving into the very picky stage…which is a huge gain from “I don’t need to eat at all” but not a fun place to be. Congrats on your son growing!

  5. Not to change the subject, but I love Apollo’s shirt.. where did you find it??

    • bakersdozenandapolloxiv

      I bought it at Old Navy a few months ago. It came with a tie as well. I tried to find a link, but didn’t see it on their website. Apollo’s favorite color is still pink, so I am always on the lookout for kind clothing for him ๐Ÿ™‚

Please share your thoughts!