so, he hasn't gained any weight in the last couple months. in fact, he's actually gone down in the last few weeks! (hmmm, wonder why?) anyway... this is a problem for him. (remember, weigh loss is yet another effect of CHF and other cardiac issues) well, dr b the paeds is going to be calling the dietitian to discuss this, and put asher back up to 30 cal formula. in the end, this will be easier, since Pediasure comes in 30 cal, it's just that we have to dilute it for asher. but yeah, weight loss bad. so that was a bit upsetting. but relatively, that was nothing. stop reading now if that was too much for you, because it gets worse from here on out.
well, we were discussing his feeds, which aren't going so well. i told her that every once in a while i try giving him some solid food by mouth, just to see how it goes. turns out, he loves those mum-mums, those rice cookies that dissolve in the mouth. he loves them, can't get enough of them, and doesn't seem to have too much trouble with them. so that's a good thing. but... i also told her about the sweet potatoes the other week, when he took a couple little tastes and aspirated. not so good, esp given the tiny amount he took. then....
i told her that he's been refluxing lately. she said, "how can that be, when he has the j-tube? there's nothing in his stomach." she asked how i know. i said, i can hear it coming up from across the room, and then he gags, coughs and then his breathing is wet, crackly and laboured. see, this is a BIG problem. worse than the weight loss. ugh. so, she's going to call dr howard (gastroenterologist - the "poop doctor" as he calls himself!) and discuss a fundoplication. asher simply should not be refluxing. at all. so it has to stop. and given that he's already on some heavy-duty meds for his reflux, this is the only thing left to do to fix it.
now, i'm sure most of you don't know what a fundoplication is. so, welcome to Paediatric Gastroenterology 101. ready? (i'm posting a very crude drawing of the upper GI tract for you, in case you're visual, so you can refer to it.)
the stomach is on the left side of the body, just below the ribs. there are sphincters (they're like valves, but slightly different) at the top and bottom. the one at the bottom allows stomach contents (like food) down through the rest of the intestinal tract. that sphincter prevents anything from coming back up into the stomach. the sphincter at the top allows food etc to come down the esophagus and into the stomach, and it prevents anything from going back up the esophagus. so basically, the GI tract is like a one-way street (ah, hamilton....), and those valve-types stop anything from going the wrong way.now, asher's sphincters don't work well, at either end. the bottom one doesn't let anything go down the tract. so not only was he constipated, but anything in his stomach just sits there for quite some time.
well, the sphincter at the top doesn't work, either. this sphincter is looser, and doesn't prevent food from going back up the esophagus. this causes reflux, or heartburn.
further up the tract, there are the muscles that force food down the throat (this is called "swallowing" - lol). there is also a flap, called the epiglottis, which is open most of the time, but closes during the swallow reflex (this stops you from drowning on your supper, and allows you to breathe the rest of the time. it's why you can't breathe and swallow at the same time). asher's epiglottis doesn't close. it's open. all the time.
now, let's put all this together: he has, essentially, no swallow reflex, so food has trouble getting down his throat. his airway is always open, so anything going down has a very real potential (and tendency) to go down into his airway. food, normally, would go into his stomach, through the sphincter and then out through the other end into the lower GI tract and out. but the lower sphincter doesn't open, so anything in his stomach stays there. and it goes back up, too, through the upper end which is open/loose. stomach contents go up the esophagus (this is the wrong way) and into his airway, which is still open.
did you follow all that? good. basically, asher's food goes back and forth, up and down up and down up and down.
this is why he got the GJ-tube. this tube goes in through his stomach and down through the tract into his small bowel. this limits the contents of his stomach to only what he produces himself. no food is in his stomach anymore, ever. this tube, combined with the meds, is supposed to prevent reflux. the problem is... it's not preventing reflux right now.
ok, so now, back to the fundoplication. this is an operation which rotates the upper sphincter, closing off the stomach at the top. so nothing will be able to get down into the stomach or back up the esophagus, and reflux will be history.
but did you catch that? it's an operation. another surgery. the upside, if you choose to see it, is that this surgery can and would be done in london. closer to home. i like "closer to home." but still, it's another surgery. makes me wonder... how many surgeries can one little boy need?
i'm hoping dr b holds off on all this till after the heart surgery. i think this reflux is due to the cardiac issues (these often go together, for some reason), and it's not really a gastro issue. if that's the case, it will stop again once his heart is "better." but, if it doesn't clear up post-op, then i'm happy to meet with dr h and discuss the surgery.
this is why i was so upset last night. too many surgeries. my boy is too little for all this. none of this should be happening till he's about 80 and has had a good, long, happy, healthy life. and yet, here we are.
so, please pray for asher. pray that his heart will hold out for just a few more weeks, and his reflux will stop, and he will be back to happy baby asher. thanks. h
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