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Posts by MotherWhimsey

If it makes you guys feel any better, we have been rx'ed 3mg for my 38 lb 4 year old and my 42lb 6 yr old. Neither of them crash hard, it's still hard to get them down but not impossible. It's not uncommon for my daughter to still be awake a couple of hours after going to bed even with 3mg. Without it she just doesn't sleep until crazy insanely late hours and it's a huge disaster. Linden takes about 30 minutes to fall asleep at least on a good night and has a much easier...
we use the adult version and ours doesn't have alcohol in it.
Hey, my son has a G tube, J tube and o2. No trach though and no TEF. What kind of feeding pump do you have? You need a zevex if you don't have one, they're teeny tiny. You'll figure out your groove pretty quickly and it'll all just become fairly normal. Maybe a pain in the butt, but very normal all the same.  
Honestly, you just kinda hit rock bottom at some point, become resigned, and get used to it. It's exhausting no matter what, but eventually you do get used to it and it just becomes your normal. It's very exhausting though and I'm not sure it ever gets less exhausting. :hugs
my son's 4 and we use goodnights during the day and ATN's at night. That stands for All Through the Nights which is a juvenile diaper.
nope. wouldn't worry me.
what do you mean needleless cap? And the tubing on the huber needle or the pump tubing? We use the red cap on the IV tubing when he's not hooked to it if we're going to put it back on. We have this white cap thing that goes on the end of the tubing that's stuck to him. We call it the "dongle" and I can never remember the real name. And on top of that we put this orange cap that has an alcohol sponge in it. The orange cap is not a normal thing to use but we are test...
  There is this stuff you can swab on that is like cement. If you use that stuff and the hypoallergenic kind it works well. I'm just not sure what the skin cement is called. One time my kid stuck the swab in his belly button and sealed it shut and it took weeks to work its way back open all the way. The stuff is crazy.    
I think the tubing is pump specific, at least ours is. This is our pump, it's tiny so I don't really know anything about the weight issue.
what pump are you using?   We use the Cadd Prizm pump.   I want one with a charger instead of batteries so I'm always keeping my eye open when people talk about their IV pumps.   One HUGE word of wisdom that was very very painfully gained, make sure that you have an air sensor on your pump. They do NOT usually have them on and you usually have to ask for one. We found this out the hard way after a pulmonary air embolism. All it takes is 5 cc's of air through...
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