Last week: 9.9 kg (21 pounds, 13 ounces), 33 inches
This week: 9.85 kg (21 pounds, 12 ounces), 34 inches
Week's change: -50 grams (1 ounce), + 1 inch
Net change: +2150 grams (69 ounces = 4 pounds, 5 ounces), +5 inches
Becca was sick over the weekend with another NSVI, so the weight loss is not unexpected. (NSVI = a non-specific viral illness, which means that the docs don't know and don't need to know what it is because it's not very serious and they knowing would change the course of treatment. We've had several of these this winter. I think it's amusing that there's a technical name for it.) She's still a little puny but doing fine and no longer contagious, just a little more, um, opinionated and tired than normal.
The second half of last week and this this week have been a little crazy as I've had to work with several of Becca's care providers and suppliers in order to get things straight. (Yes, Becca has suppliers. And we had to switch some of them around due to insurance changes (not doctors, just her dealers). It reminded me of why I'm not working full-time these days! We also ended up in a feeding supplies crisis, as we still don't have the feeding bags that we needed on Monday, 'cause, hey, we don't REALLY need them every night, do we. (We do.) Super friend Mollie helped me out and saved us from having to wake up every couple of hours to bolus feed the tube-fed princess.
We did finally connect with the GI folks. I spoke with a nurse who was either consulting directly with Dr. Moulton or is at least smart enough to say that she was. :) After a good bit of trouble finding a pharmacy that would work with use (see above), we have now started Becca on the compounded generic formulation of Prilosec. (Compounding just means that they take the solid medicine and make it into a liquid. Only certain pharmacies do it and only certain compounding pharmacies file insurance claims for those meds and only certain methods of compounding are covered by TennCare. These are things I learned this weekend.) We were able to dissolve the Prevacid solutabs in water and give them to Becca because the little balls of medicine (like the ones that are in the adult capsules) are designed not to dissolve. We couldn't crush it up and put it in applesauce or any other food that consistency because she doesn't eat those foods. She has taken a few bites of applesauce in her life, so we did try that and she gagged on it and puked...which made for a negative association with applesauce in general. Awesome. Besides, the Prevacid didn't seem to be working anyway, since even when we could it get in her, she still usually threw up another time during the day. The liquid Prilosec apparently tastes really gross (to Becca), so we shoot it directly into her button. It's kind of a funny process - we measure her 5 ml's in a small syringe, squirt it into a big syringe, add an adapter that fits into her button (which the small one doesn't have), and squirt it in. But hey, she's not gagging on it and throwing up! Actually, she is still throwing up, but not from the medicine, and it's only been a couple of days on it. I'll keep you posted!
Do you have to go to the pharmacy every day to get the Prilosec liquid? Our pharmacist told me that compounded Prilosec is only stable for like one hour or so, so we'd have to come in every day for a new dose. (Which is why we went with opening up the capsules for Jackson, who of course doesn't have Becca's issues.) If that's true, then that may be why Becca isn't seeing improvement. If they compounded a whole bunch for her at once, it might not have any active ingredient left. Maybe they did something different, but that is just what I was told about six months ago. Might be worth checking into.
ReplyDeleteSorry Becca has been sickly, btw. Glad everything seems to be starting to work out with Becca's dealers/suppliers. (Makes me think of the *other* kind of dealers and suppliers. LOL!)
I remember doing the same thing with Nathan when he was on multiple meds for his "silent" reflux. The pharmacist in Prospect was so excited to get to work with us (really, truly) because he says it's so boring to pharmacists to open a bottle, count some pills and that's it. He loved compounding all of Nathan's meds. I hope you are encouraged, seeing where Nathan is now - almost 18, 5'11" and 160 lbs - and no longer on reflux meds. You're an awesome mom and Becca's one lucky gal!
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