At first I made light of the situation. After all, he hadn’t thrown up for seven weeks, the longest Aleck has ever gone without making his last meal into wearable art. But I’m pushier with foods, always wanting to try new things to see what else he’ll eat to make feeding into an enjoyable acitivity rather than the anxiety inducing circus act it’s become. We’ve been able to eliminate all kinds of things to help keep the food where it needs to be, no tomato sauces, no string cheese, no american cheese, no hot dogs, no brisket, no chicken nuggets, no beef stew. And he’d been doing well for most of December so we weren’t really worried. Doing well for Aleck still means he eats like a 14 month old, he refuses to drink most liquids and it feels like we spend a ton of money to throw milk and apple juice down the drain on a regular basis. I even find myself scolding Craig for putting too much of either in a sippy cup, knowing he’s barely going to touch any of it but feeling obligated to keep trying telling myself he’s doing a little better with each meal, even if he wasn’t. Luckily he’d been consuming his two bottles a day with gusto, and thanks to Miralax we’d been able to keep his bowels moving pretty regularly. When our pharmacy alerted us that he’d run out of his script we realized we were overdue for a GI appointment. So, no big deal, he’ll probably up his dose of Prilosec and we’ll just keep moving forward, well sort of, these baby steps have turned into baby goldfish steps, and I just keep taking deep breaths reminding myself that things will get better.
At the end of last week the throwing up took a big turn for the worse. Sitting, calmly, in my lap on the couch, suddenly he gives up two ounces of his bottle all over my lap. Screaming at me during bottles he wants to lie down, he wants to roll over, then he gives up four ounces onto the couch and the rug. I chalk it all up to the medicine, we should have been to see the GI in November, he’s grown, he needs more. But then as I imagine giving him even more medicine, and more and more every 6 months, I start to feel sick to my stomach. Plus we’ve seen other strange symptoms lately; he’s been farting more, he’s been burping more even when it’s been hours since a meal. Normally when we’d put him down to sleep at night we would say goodnight and that was all. Over the last week we’ve had to go back in three to four times to calm him down. That often means picking him up and putting him on my shoulder just to make sure there aren’t any more burps stuck in his tummy that would cause another round of regurgitation. He’s even started asking to be picked up and put on my shoulder, even if it’s just for a minute, and he always gets out at least one burp. Now picking up your child from the crib is usually a pretty instinctive reaction when they are crying in their crib, but for Aleck we try really hard not to pick him up. After all he wears about 4 pounds of equipment on him, steel elbow splints on each elbow, plastic splints on each hand, and until recently he had his shoes and metal bar on. One false move on the changing table and I could lose a tooth or wind up with a black eye. Because of the outward rotation of his right leg we’ve transitioned out of the shoes and bar so now he’s wearing his AFO’s (plastic ankle foot orthotics) to sleep instead and that has made caring for him in the middle of the night a touch easier. Usually all it takes is a little soft rubbing on the back and some quiet whispers and he’s good to go.
Of course he’s also been teething lately which makes everything much more difficult. It’s so hard to eliminate the variables and get to the bottom of the feeding issues when his mouth is driving him nuts. With Tylenol or Advil before meals we’ve seen an improvement in eating solid foods, but it hasn’t helped with the bottle. And on a Monday or Thursday morning when we have to be downtown by 9am, after 45 minutes of coaxing three ounces of bottle in him I just have to give up and move on. What’s really funny is that during his bottle he’s been asking to go into tummy time, a move his OTs and PTs always want him to do but he usually resists, a move I do to get burps out of him during bottles, but I usually have to bribe him with my phone to get him there. Now he’s putting himself into tummy time multiple times during a bottle, whether I’ve got my phone out or not. I just thought he was getting used to the position and this would only cause him to make more progress with his therapies. In truth, he’s trying to get the bubbles out of his tummy more than I am because something is obviously bothering him.
And our GI thinks so too. After seeing him on Friday we’ve added a new medication to our daily line-up, Carafate, to give him before each meal that should help coat the lining of his stomach to eliminate all the discomfort he’s been feeling. The idea is that the mucus in his stomach lining has been eaten away, at least some of it, because of the acid reflux and all the vomiting. But that’s not all. We also think the acid reflux and vomiting have done a ton of damage to his esophagus and he may have esophagitis. So when Aleck goes in to have the metal plate removed from his hip on January 30th, they will also do an endoscopy, put a very small camera down his throat and into his esophagus to look for signs of esophagitis, an infection, or food allergies.
Frankly I’m relieved and optimistic that we are actually going to get to the bottom of all of Aleck’s tummy issues. It’s so hard to describe your child as awesome and tons of fun to be with unless you are trying to give him a bottle, a meal, or a snack. He’s never eaten more than 5 baby goldfish in one sitting, he won’t eat more than one dry cheerio at a time, I can’t even get him to enjoy cookies or ice cream. Chocolate pudding is one of the only treats he seems to enjoy but the chocolate is bad for his acid reflux, so is the milk. To his credit he’ll try anything once, but there isn’t much we can really get him to eat in any kind of volume except cottage cheese, scrambled eggs, and yogurt which makes taking him out to restaurants to eat an exercise in futility. It’s all so disheartening because his eating complaints aren’t consistent with his personality and all we want to do is take him for new experiences and fun excursions. Instead we end up cleaning up vomit at the Palm and knowing that a meal he has that’s not at home is a total waste of time and energy. In the last two weeks he’s lost 9 ounces, that’s more than half a pound, and since he’s only 22 lbs that’s a lot for him. With the surgery coming up we’ve been worried about what weight he’ll lose due to discomfort after the surgery and anesthesia, so the timing of this recent weight loss couldn’t be worse. And in the end it’s so hard not to blame ourselves for all of this.
Feels a little like deja vu all over again as we were preparing for his tonsils and adenoid surgery this time last year, anxious about his vomiting and his low food and liquid intake. It’s not been as bad as last year and we’ve actually been able to keep all food contents where they belong for the last week. But our small outpatient surgery has turned into a full blown event and we are securing an inpatient room at Lurie to try to make the experience less stressful. Now I’m just waiting to hear back from Aleck’s ear/nose/throat doctor to see if he wants to scope his lungs while he’s under. We figure hey, now’s the time, why not milk this and get everything checked out while he’s under so we can spend the rest of the year anesthesia and hospital free.