After my victorious post about Mikaere putting on weight… I’ve had to retract all that joy and positive forward momentum. As of this morning, Mikaere is 10.37kg. Which is to say, he’s the same weight he was three months ago. Except that now he’s longer, and he’s lost all of his beautiful baby chubb. You wouldn’t know it to look at him – he looks so well. Like a happy little boy. Except that most people don’t see him without his clothes on. You can’t see his ribcage or the way his little vertebrae stick out. Now, just to clarify, he is underweight, but he’s not in emergency, dire situations. We’re sitting at about the 20th percentile.
Even more relevant, is that we know *why* he’s not putting on weight, and it’s because he can’t keep food down. Oh the vomiting. The vooooommmiting. It’s everywhere, all the time.
Here’s the thing. Mikaere has a not-cold. He’s not really ill, he doesn’t have a chest cold or a temperature or a touch. What he has are secretions. From teething, maybe? From life? And every time he can’t handle a secretion he vomits. His body and his stomach is so sensitive. I spent a long time talking to our osteo about the structure of the stomach.
I’ve said it before and I’ll say it again – here is research that says a lesser curvature gastrostomy reduces the incidence of postoperative gastroesophageal reflux (aka, vomiting because of the gastro – source) so for everyone due to get a gastro – you’ve been warned. Asked for a hitch with a low curvature and make your surgeon agree.
I’m positive that because Mikaere’s stomach has been hitched high to his abdominal wall, this has pulled his stomach up at an unnatural angle, changing the way food sits in his belly and puts pressure on the lower esophageal sphincter, which is that the nice bit at the bottom of your esophagus that keeps your food in. The outcome of this is that he’s a trigger-happy projectile vomiter now. All the time, everywhere. In the buggy, the car seat, the crib. Sitting up, or down or side lying. Moving, not moving. On the blended diet, formula or dioralyte.
I thought we were getting somewhere with reducing the frequency of his feeds and the rate at which we feed him, but now we’re going even slower, because fuck. The vomiting. I thought we were on the up but I was wrong. Womp.
Anyway, like I said, we see an Osteopath every week thanks to the amazing charity Osteopathic Centre For Children. Side note: Osteo is essentially concerned with the mechanical arrangements/movements in the body, particularly in terms of alignment. They do a lot of soft tissues massage and joint manipulation, though to be honest, sometimes it literally just looks like they lay their hands on Mikaere and close their eyes. We see the same therapist every week and every visit in the few weeks has included a projectile vomit. It’s so so horrid.
But this week, this week Stuart was in the clinic. He’s the director of the Foundation for Paediatric Osteopathy and is essentially one of UKs leading osteopaths. Stuart is essentially magic. He came to see Mikaere and we talked about the vomiting. Leading an additional two osteos, they did their hand laying/eyes closed trick and talked about medical terms (the sacrum, the vagus nerve etc. They later translated to say Mikaere’s insides were a bit twisted around the hitch, which caused his body to work a bit like a spring. They were trying to untwist all the things).
I’m hopeful, as always. I wasn’t convinced they were going to stop the vomiting, but Mikaere enjoys osteo, he always relaxes and they’re not doing any harm.
Oh, silly disbeliever me. After his appointment, we went FOUR DAYS without a vomit. Considering we had normalised at to 2-3 vomits a day, four days of not changing sheets or cleaning carpets or multiple baths – what a relief. You can be sure I showed up the next week with a ‘more please’.
After every visit, we’re seeing longer and longer vomit free times. I don’t fully understand it, but I’m grateful. Mikaere is not yet back up to where he was, weight wise, but if he can keep food down it’ll start, right?
Magic Osteo’s. Definitely recommend.
Now, I know that $10k doesn’t seem like much, but it makes all the difference. Unfortunately this amount won’t be matched by the University of Colorado like we had originally hoped. We tried working with them, but they’re a state funded school and can’t release the funds for Van Hove.
