A (not so) Brief Interlude on Ayden

Three Fridays ago, we started Ayden on a four week trial to test how much fluid he would drink daily on a consistent basis. In other words, we were going to try to go four weeks with him only getting food or liquid by mouth. Because we weren't going to use it, we pulled the feeding tube and didn't put a new one in. (He was already taking all his medications by mouth, so that wasn't an issue.) We even stopped giving him one of his medications because it could cause kidney damage if he wasn't getting a sufficient amount of fluids.

When we pulled the tube, he had shown the ability/willingness to drink 28 ounces a day. I was confident we could work that up to 30 ounces within a week or two. That 30 ounces, combined with the liquid contained in his food, would get him pretty close to "maintenance fluid" level (36 ounces) each day. Maintenance fluid is the amount of fluid one is supposed to consume in 24 hours in order to maintain the necessary fluid level in one's body. For fun, you can calculate how much you should drink each day here (FYI: 1 oz is approximately 30 mL).

Murphy's Law: Anything that can go wrong will go wrong.

By the following Monday, three days later, Ayden had developed a pretty nasty cold. He was congested. He was coughing. He lost some interest in eating (but not drinking). Once stuff started to drain into his throat, he was gagging and throwing up. He lost almost all interest in eating and started to become less inclined to drink. Several times,shortly after getting him to drink 5-8 of formula in a sitting, he would start coughing and gagging, then throw it all back up. Eventually, it started to feel like we were torturing him by making him have to drink more fluid to replace what he just threw up.

One week after we had pulled the tube for what we legitimately thought would be the last time, we put one back in. The trial was over, essentially before it had even begun. We simply could not get him to drink enough to make up both for not eating and for throwing up several times a day. He would have spent three quarters of the day in the high chair. As heartbreaking as it was to do, we really had no choice. I'm confident he would've ended up in the hospital for dehydration if we hadn't put the tube in when we did.

The really sad/frustrating/disappointing/etc. part is this: he was ready. Ready to eat enough. Ready to drink enough. Ready to take his medications by mouth. Ready to no longer need the tube. It was time. And then it wasn't. Him getting sick could not have come at a more inopportune time. Four weeks earlier, or even four weeks later, and it wouldn't have mattered.

Now? He's eating a fraction of what he was before he got sick. Instead of six ounces of yogurt for breakfast, I'm lucky if I can get him to eat four. And, because I have to give him such smaller bites, it takes three times as long to eat less. Tonight, I was barely able to get a container of pudding in him for dinner. Prior to getting sick, that pudding container would be the dessert to go with four cubes worth of pureed vegetables. Aside form the thinnest one, even offering him a single puree cube is out of the question right now.

I have no idea how long it will take him to get back to where he was with eating. He's clearly not as comfortable with the process as he was. His gag reflex is much more sensitive. I believe it's all in his head, as it was before. I just don't know how long it will take to convince him he can take bigger bites of thicker foods without feeling like he's going to gag. Until then, the tube will stay in. The upside, if you can call it that, is he's drinking almost as much as he was before. It takes a little longer to get the same amount in him, but the difference is not as great. Thus, the script has flipped. He's drinking enough, but he's coming up short on caloric and fluid intake through his eating.

If I ever come face to face with Murphy, I'm going to punch him in his.

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A few weeks back, Allison decided to stop leaving a pacifier out in the living room for Ayden. (To my surprise, he didn't seem to notice its absence.) It turned out to be an inspired decision. Without the pacifier occupying his mouth on a constant basis, he started talking more. Most of it continues to be gibberish, but there has been a marked increase in the amount of clear words he can say (some are his versions of a particular word - e.g., he speaks Russian when he says "yes"). Also, he used to only mimic a single letter sound. Now he is starting to repeat entire words, including two syllable ones ("dirty" is one example). I've added a new sidebar to the blog where I'll keep a running list of the words he's saying.

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He continues to develop in other ways, as well. He can now walk backwards. He's picking up multiple objects at one time, with the same hand. I've also noticed he's learning and figuring out new things more quickly. If he gets a new toy, I only have to show him how to use it once or twice. I was especially impressed with how quickly he learned to use his drill - he'll use it to sink his toy screws all the way in.

We've also been teaching him body parts. So far, he knows how to locate his arm, leg, foot, hand, mouth, nose, ear, head, and belly. With the last one, he's started lifting up his shirt to either point to it or rub it. In typical Ayden fashion, he steadfastly refuses to show other people he knows where those body parts are.

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Finally, you probably noticed from the pictures with Brogan that I cut his hair again. It had been many months since the last one. He's more mobile now, so it was more of a challenge for me to not injure him in some way, but I managed to get it done without causing any physical harm. As for emotional harm, I think Allison is still mourning the loss of his longer hair.