Monday, March 13, 2017

Week 186: The year of the tube

Hard though it may be to believe, it has now been a full year since Lemon had his G-tube placed. A year since I spent 6 nights in a hospital with a toddler and an infant (no, I don't have any recollection of how that worked). A year of figuring out how to use this new tool that we'd been given to wield in our fight with CF. It's a fitting time to reflect--just last night, I spent an hour on the phone with another mama who is standing where I stood a year ago, trying to figure out if taking this big step would be the right decision. For us, I think there can be little doubt that it was, but the road between the day of the surgery and today has not been an easy one.

A year ago, Lemon weighed 25.4 lb and was in the 6th percentile for weight. Today, he's 36 lb, and in the 80th percentile. Before, he was in the 30th percentile for height, and now he's in the 70th. Before, we couldn't get enough vitamins and fat into him to get him to be even at the lowest end of the "normal" range on a number of nutritional tests. Now, we've had to cut back his daily multivitamin dose by half so that he doesn't exceed the normal range. The numbers speak for themselves.

But, the tube is a tool, not a magic wand, and it's taken us some time figure out how to use it. We had to figure out what a "normal" g-tube site looks like, what an infection looked like, what granulation tissue looked like, and what do do about each of those things. We had to figure out how much formula Lemon could tolerate, and how fast, and how many hours had to elapse between the end of the tube feed and the start of his morning therapy. We had to learn how to do daytime bolus feeds, and figure out how to incorporate them into our daily routine. We had to learn how to swap out the G-tube itself when the old button was worn out (and what worn out even means in a G-tube button). We had to let Lemon learn the wet and messy consequences of disconnecting the tube during the night.

I think the biggest lesson we had to learn was about how to use the tube when he was sick. I had the idea going into this that the tube would allow us to keep him fully nourished while he was ill. For him, at least, that's simply not the case. Tube + illness = vomiting. It took us a few times to absorb that lesson, but I think we've mostly got it now. What the tube does mean for us is that we don't lose quite as much ground when he's sick as we used to, and whatever ground we do lose we can make up very quickly. It also means that we can keep him hydrated and bypass ye olde gag reflex when giving bad-tasting medicines, both of which are really invaluable benefits.

I'd really hoped that, with the tube, Lemon would learn how to eat. I thought that if we could just take the pressure off of him, and let him eat whatever he wanted, not just rich, high calorie foods, that he would find things he liked and enjoy eating them. Not so. If anything, I feel like the security of the tube has let him be as weird about food as he likes, because some part of his reptile brain knows that he's getting the calories over night, so there's no incentive to eat actual food during the day. From the beginning, I'd imagined it would be a few years at least before we'd be ready to wean him off the tube, but now I really wonder if even that estimate was optimistic. Now that we're used to the tube, though, I'm in no rush to get him off of it. I suppose some day, he'll be ready. Or not: there are plenty of adults with CF who have tubes and do overnight feeds to keep up with their caloric needs. But, once he turns 18, I'm not getting up at 3 a.m. anymore to to turn off the pump!

I almost never plan blog posts in advance, but with the anniversary of Lemon's surgery this week, I'd been carrying around a sketch of this week's post in my mind all day. Of course, the one time I actually have a plan, an exciting research paper come out the same day. But, it would be too long a post to do both things at once (and a girl's gotta sleep sometime) so I'll talk about the research paper next week. It ties into a lot of themes from my day job and current events so I"m excited to write about it and give it the space that it needs. So, do your homework, read the abstract for the study in the Annals of Internal Medicine, and come back next week!





1 comment:

  1. Sad..life expectancy...I feel so bad for all of you..especially Lemon.

    ReplyDelete