she's so nice and really seems to be on the ball. i appreciate that.
so, yeah. we had respirology this morning. i'll admit, this appointment snuck up on me, but i'm really glad we went today. it was one of the quickest and most productive appointments we've had in a while. and we've had some "great" appointments lately! (and yes, i'm including the epically discouraging gastro visit the other week. even though i didn't like anything doc had to say, it's nice to have a plan and some direction. anyhoo...)
the quick stats, for those who want to know:
asher checked in at 16.1 kg (35.5 lbs, give or take), and 103.1 cm (3' 4")
BP was 94/48, HR was 86-87 bpm, and sats were 96-97%
the nurse told him she had to give his arm a hug, and then he turned to me and said, "mommy, she needs to do the blood thingy, right? with the thing around my arm?" she looked at him like he had just sprouted a second head - how does this kid know that?! i said, "he's got half a heart. he's kind of a pro at blood pressures." then he told her she had to put the light on his finger (for his sats). i wonder if she'd be surprised to know he does his own ECGs? haha!
then doc comes in. she sits down and we got to talking. other than over the last week or so when it's been more damp, asher hasn't really been coughing much. as in, almost never. but he has also been having some blue spells (he was notably pale at clinic, and has actually had several blue spells over the last week). he has been a little short of breath lately, too. which led me to comment,
"we've recently started back with gastro." i filled her in on asher's complicated (read: lengthy) GI history, with dysphagia, aspiration, severe chronic GERD (he's refluxing almost constantly now, even with prevacid twice a day), vagus nerve issues, and a possible malrotation in his bowel.
"is it possible," i asked, "that what you saw in his lungs on the CT scan was actually aspirated stomach contents?"
"it's possible," quoth she. and upon further discussion, she offered, "that would actually explain everything."
and so, gentle readers, i present to you her plan:
she's going to investigate. she is ordering a modified barium swallow study, to see where things go and how things work when asher swallows. for those of you who don't know what's involved in this study, asher will have to eat or drink something with barium in it (yum! you're jealous, admit it) as a special xray watches how his throat functions. he's had this test twice already, and both studies found the same thing: his throat muscles were very uncoordinated, resulting in an almost total lack of a swallow reflex. formula trickled down the back of his throat, pooled on top of his epiglottis (which was up, leaving his airway wide open), and then spilled down his esophagus. i think asher's swallow reflex is a bit more co-ordinated now, but hey, you never know.
the second test doc is ordering is some sort of nuclear swallow study. for this one, he will eat/drink something with a small amount of radiation in it. he will then undergo imaging at the time, at the half-hour mark, and the one hour mark. the idea is to see if asher is refluxing, how much, and where it's going (going back down to the stomach, spilling into his lungs, that sort of thing... which, now that i'm re-reading that sentence... ok, those are actually the only options, since he doesn't vomit. haha you know what i mean, though, and that's what really matters, and now i'm babbling, so anyhoo.............)
a bronchioscopy was mentioned, but she says that they would only go that route is there was the possibility of permanent damage to his lungs, and she didn't see any evidence of that on his CT from august, so i think we're going to be ok with "just" the swallow studies.
we are to return to resp clinic in six months, or after the swallow studies. whichever comes last. "unless he gets worse, in which case, keep the appointment," she advised.
so that was our day. :)
and now, since i have you here, i'd like to ask for a favour: please hold a couple of asher's buddies in the Light. B is in the hospital right now, and has been for some time. please pray for her, and pray for the team caring for her, and for her family. also, as i type this, sweet little H is in emerg. please pray/send vibes/cross crossables for these sweet little girls. thank-you.
you are Loved.