Totally tubular

About a month ago (wow, a month? It doesn't feel like a month), I mentioned that the feeding tube was firmly on the table again. Since then, her eating habits have gone from Barely Enough to Most Definitely Not Enough. She has been sick almost without a break since school began and it makes her Most Definitely Not Enough status morph into Should We Just Pack Our Hospital Bag Now? status. I've been experiencing varying levels of anxiety about her intake and general health for a couple months now and although there are times when the anxiety almost dissipates, another illness or other obstacle is waiting in the wings and takes center stage before I ever get to experience that great big sigh of relief. During our last pediatrician's visit while we were going over a list of various KayTar-related items, she said, "Do you want the surgeon's number?" I eloquently stuttered something to the effect of "Yeah. Okay. Sure." and called as soon as I got home, lest I lose my nerve. To my surprise, because this NEVER happens, the scheduler said, "He can see you next week." So I once again eloquently said something like, "Yeah. Okay. Sure. That will be fine." and shakily wrote it in my calendar before I lost my nerve.

The appointment was last Thursday and it went well enough. I think I expected some sort of conversation about whether this was really the right thing for her (which I was internally agonizing over), but there wasn't and that in itself kind of made me feel better. Looking at it as something to be done, rather than an agonizing decision to be made was a relief. He was kind and honest, which I find to be admirable qualities in most people, especially people who will be cutting my child open. He was honest about the procedures and risks, which I was already familiar with from my own reading and surgical video watching, and he didn't make it seem like a huge deal, which was also a bit of a relief. Next week she has a tonsillectomy consult with her ENT and then their schedulers will have a chat and get a date on the calendar for both surgeries during her winter break. We're doing a two for one sort of deal, trading in the tonsils for a tube in hopes of cutting down on infections and improving her intake all at once. It is what every three year old wants for Christmas, I'm sure!

Internally, I'm still torturing myself a bit with the decision. Logically, I see it as the best thing for her or else we wouldn't be pursuing it. Josh and I both agree on it and he isn't really a medical intervention kind of guy, so that in itself is reassuring for me. Emotionally, though, I still have doubts that resurface periodically. This evacuation has been really good for her, which just encourages the little doubts to speak up a little more. She's been drinking 2-3 Pediasures per day again. She is finally healthy (KNOCK, KNOCK, KNOCK on wood). She has been snacking more often (on chips and bacon mostly, sigh). Logically, I know this is because we have been effectively under house arrest and there has been nothing to distract her from the work of drinking and eating and she hasn't been exposed to any germs outside of the home either, and we can't live our lives like that indefinitely. We can't keep her home from school or therapy or camp or fun or LIFE just so she has time to drink her bottle or avoid illness. It isn't a worthwhile trade for her. She loves school and therapy and all of the fun stuff her days are typically full of. To achieve this brief period of eating and drinking like she was 6 months ago, we've basically cut everything else out of her days. She shouldn't have to devote her 12 waking hours each day to receiving minimally adequate nutrition. We shouldn't have to pass on trips to the museum or the park or the zoo for fear of what little pathogens she will bring home as souvenirs and what it will do to her intake. But we do. We think about these things now, daily. They factor into the decisions we make for her every single day. And these big surgical decisions we've made recently, although they feel enormous and frightening at times, can change that. These surgeries will help her be healthier, they will help her get adequate nutrition without it being a chore for her. She can live her life fully, and whether or not that includes 3 bottles or not, we can make up the difference for her. When she does get sick and her oral defensiveness kicks into hyperdrive or she feels too poorly to drink, we can make up the difference. The g-button won't change her bizarre relationship with food and drink, but it will give us the ability to carry her through it when she can't or won't do it herself. I believe--we believe--that ultimately it is the right decision for her, but sometimes I really have to work to remind myself of that. In roughly three months, my little girl will have a wee plastic button on her belly and we fervently hope her quality of life will have improved exponentially for it.