Tuesday, May 22, 2012

Happy Anniversary to the Tube

When Mr. Boy got the feeding tube in his nose one year ago, we were told it was a solution that would last a few months. Honestly I didn't know how we'd survive it for a few days, but we held onto the thought that it was only a few months, so we could handle it.  Everything seems like a bigger deal when you are first exposed to it. Then a few months passed... then a few more and Mr. Boy's vomiting subsided for a time and I though we would just pull the tube out and wha-La! Mr. Boy would get hungry, eat, and we'd live happily ever after. But we came to find out that a medical solution always has a side-effect, and in this case it happened to be not learning how to eat. All the vomiting makes kiddos nervous to eat because its painful and they grow slightly averse to most food, plus they grow dependent on the tube and don't see/feel the need or pleasure in eating. The only way to force-feed a child is through a tube, so that becomes the norm. As we are finding, years and years can go by before the kids get weaned off the tube and can eat all their necessary nutrition. For instance, by age 4, you could have the tube feeings down to just the evening, so you let the kid eat all they can, but "all-you-can-eat" may amount to just 500 calories, so while the child sleeps, the parent can give the child the extra 1500 calories (or however many) they need. And thus the tube endures.

Most kids, if they need a feeding tube, get it surgically inserted in their abdomen so its not taped to the face (not that having the tube on the side of your body is really that much better), but with Mr. Boy's other medical device, there is not enough room on his side to put the tube, so here we are, a year later, with a baby that still has a tube taped to his face. Everything is easier when you can mentally prepare yourself for it. I prefer being told the worst-case-senario so that I can be either ok with the outcome, or pleasantly surprised by it, because I was warned. For example, we were told Mr Boy could be in the hospital up to a year after birth, so 3 months seemed really short because we prepared ourselves for the worst. We were told our son had many birth defects and were told many of the possible outcomes of these, but a feeding tube was not one of them. And this journey with the tube has only been largely disappointing throughout. I wish someone had spelled it out for us, but instead, we thought it would only be a couple of months and Mr Boy would be all better. Instead, we are finding that once you resort to the tube, you could be looking at most likely years and years and maybe even life-long feeding issues. Now that I know this, I can re-organize my expectations and then be pleasantly surprised when this ordeal lasts for only a few more years. We've learned a lot since I wrote this post: Huge Steps Toward Tubelessness.

I have a love-hate relationship with the tube. It's genius design makes it possible for my son to be home from the hospital and live normally without constant IV's. So really, I owe it my affection. But it's shortcomings and all the "little things" about it add up and make me want to yell lots of mean things at it. :)

Despite all that, we have had a lot of progress with Mr Boy's feedings. He still only nibbles on foods, but he is finally kinda chewing (by this I mean he holds it in his mouth long enough for it to completely break down so chewing isn't necessary) and swallowing mushy foods without throwing them back up! Also, his vomiting has almost completely disappeared aside from the early morning episodes. In January, we started taking Mr Boy to a chiropractor because I never let a suggestion to go untried if it could help him stop vomiting. The vomiting has gotten much better so give credit wherever you think, but lets just say we won't stop going anytime soon. Because of this, we've been able to gradually increase the speed that the pump delivers the formula so we can unhook him from the pump for more and more hours a day as he tolerates it without more vomiting. He was on the pump 24 hours a day, but over the past few months we've gotten him up to 8 whole hours unhooked from the pump a day and when we turn the pump back on, it just runs faster for the remaining 16 hours, making up the difference (since at this point he isn't eating enough food to count for a calorie). About every week or so, we try to add an hour. The goal is obviously to get him off the pump, so the more hours off the better, as hopefully he can get hungry and actually eat more by mouth, and start to reduce the amount we deliver through the pump and replace that with food he eats.

The first time we unhooked him, it was like being set free for me! Not having to follow him around the house every moment of every day is liberating and so healthy for both of us!!! Now for time each day I can actually go into a different room and not have to run back to untangle his pump or pull it around corners where it gets stuck. I can actually be in a different room from him!!! :) And to be able to have 8 free hours a day is a pure miracle for our lives. So although I whined quite a bit for the majority of this post, we are definitely making progress and are very hopeful. The only thing is that now we are more hopeful with realistic expectations. :)


  1. I'm glad you shared this. It makes me want to say lots of things about how you're awesome people & doing a great job as parents & how I appreciate the way you share honestly about what's going on, the highs & lows, and how you feel about them. You are quite special people! All 3 of you!