I know that I'm posting twice in one day and that this is actually a fairly unusual thing. But as time goes along, I like to try to segregate out the medical from the non-medical posts. It's nice to have a post or two that are not related to diagnoses, therapies, doctors' visits, and the like (though it's harder to segregate out the vomiting).
Anyway, yesterday started out with a bang...or at least a shot or two. Hallie had what will probably end up being her last RSV shot (synagis), for which she was belatedly approved (at least the doctors who do the insurance approval were smart enough to approve it, even if late: doing a risk analysis on a 23 weeker for the cost of the synagis (around 3000 dollars a shot at this point) versus the cost of hospitalization (much more, obviously, especially if you add in the likely oxygen and even possibly CPAP and/or ventilation) is a no brainer. So we plucked Hallie rudely from her bed (our futon in the 'futon room', which is distinct from our glorious yet underutilized bed in our bedroom) and raced off to get her pumped up with synagis. She was not impressed. To say the least.
She did, however, put on more weight so we were impressed. She 's now a robust 25 lbs. 9 ounces, and still at 50% on the actual charts. She is also taller than 33 inches (informal measuring at home) and this accounts for her extended reach and also places her at at least 50% in height, actual.
Then it was off to do the long-awaited (long dreaded) swallow study at CHOP. We had to be there at 10:15 and for once were on time. This was our first mistake. Radiology had an emergency and was running 45 minutes late. So they did not take her until at least 11:15 (perhaps later; I just know that Sesame Street was over, which was also not a good thing. Everything was copasetic until the closing bars of Elmo's World and went steadily downstream from there). By the time we got into the room and did the baseline x-ray (which Hallie hated since it reminded her of the ng tube upper GI of seven months ago...or at least made her feel claustrophobic), Hallie was near hysterical. She was starving (her last bottle was at 11 the night before), grumpy (11 am is naptime especially when she is up early), and now they wanted her to be strapped into a chair, sandwiched between x-ray plates and to eat barium-laced food. No way, Jose. So suffice it to say the solids we tried were thrown clear across the room (that girl can throw) and just about every time we tried to get her to eat or drink she melted down in a way that is not typical of Hallie. We did, finally, get two glugs of unthickened barium (mmmm....) and two swallows of baby food into her. That was it. It took over a half hour to do this, and that half hour felt eight times as long. Anyway, turns out she is not aspirating on thins from the straw, that she is doing fine on baby food, and that we can thicken at our discretion. The excellent SLP who has been doing these studies (and did the FEES back in January) thinks that it's because of the resolution (i.e., control) of Hallie's reflux. Anyway, since we are better-safe-than-sorry proactive mommies, we intend to keep thickening the bottle at night and nap time because her suck is MUCH stronger then and she gulps a bit, and we'll back off from the rest a little. And it's good to know that when she drinks out of someone else's cup, she'll be okay. Unless of course it contains cow's milk, which is another story. But at least we'll know that she's vomiting due to allergy and not aspiration.
On the vomiting note: Hallie has had three more, non-serial, vomit free days in March. I think we're now up to a total of 8 vomit free days in March, and I believe 25 for the year. I want to try to keep a log of this. I know that sounds insane, but there you have it: I am a counting freak.
If you've made it through this post (awake), scroll down for a much more fun post with cute pictures below:
4 comments:
yippee for vomit-free days!
I hope that someday you'll be eating sushi with Hallie, looking back and saying, y'know we remember when you couldn't hardly eat anything!
Perhaps next time Hallie needs a chest x-ray, you can get Karina to be the one to smush her between the plates. I think she'd like it then :)
Hoping the vomit stays away...
I'm sorry, I'm so far behind, but is her vomiting from reflux? Carver had bad reflux. His Fundoplycation has made a huge difference. No more pain after eating from the reflux, and no more vomiting. He's so much happier. In fact, now that he is getting double his feeds (partially due to his new G-tube), he has just come alive. He has so much more energy and he's doing so much more. It's like his brain finally got the energy it needed to wake up. He's trying to look at things now and starting to bat at toys. He's even starting to hold some toys and his blanket. It's not a fun surgery, but has really made a difference for Carver.
Her vomiting is in part reflux, but more these days due to delayed gastric emptying. This is a harder nut to crack (and also a major reason not to due a fundoplication, from what the docs tell us). The other reasons she still vomits is due to gagging on solid textures. The reflux is largely under control, but controlling it has probably made the delayed gastric emptying even worse (since there's less stomach acid to break down the food). It's sort of like everything else we micropreemie parents have had to deal with---you solve one problem but cause another in doing so (like oxygen causing ROP). You have to figure out which is more tolerable, and I think for us not harming her esophagous with stomach acid refluxing back up trumps the delayed gastric emptying and vomiting problem. Hopefully at some point we'll be able to back off on the reflux meds (though not yet---she is at a pretty high, adult level dose and it's working, but just). Then we might see more progress in terms of the pooping, and hence the vomiting. Already it's better than it used to be. And once we figure out whether we're triggering her tummy issues with any trace allergens we are not yet aware of, it might get better yet. But much as we hate it, vomiting does look like it's a way of life for the meantime and that's just the price we have to pay. We grumble, but deal with it---it's a small price, really.
Post a Comment