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Posts by MotherWhimsey

We use EMLA on my son's port and we put it on 30-60 minutes before. I don't think we've ever had a problem with it wearing off but I put a huge gob on there under tegaderm. We do some infusions at home. We have a Cadd Prizm pump and it's pretty easy to set the actual infusion up, it's accessing that's the hardest part. So I don't see why it would be very difficult for you to do an infusion at home. The only reason I could think of that would make that impossible is if...
Yes and it is AWESOME! I haven't taken a picture of it yet, I'll see if he'll cooperate when he finishes flushing. It is very very toxic green. The independence is amazing. He's always been teathered to me by his o2, but now he has it on his chair and he can just wander off. He's loving that! I think it might do me in though. Today he got halfway down a ramp and was doing just fine but suddenly decided to "fly" down it by putting his arms out and just took off so fast...
s I can totally and completely empathize with you. I can't put it into words very well, but I've been through a very similar situation over and over and over. It's always out of the blue and a punch in the gut when something comes back unexpectedly bad. I'm sorry.
well, it's basically the same as an NG except it passes through the stomach and into either the duodenum (nd tube) or jejunum (nj). The down side to both of these is that the placement has to be confirmed in radiology, so you can't just drop it yourself. Also you can't do bolus feeds, it has to be continuous. Chances are if you're moving to an NJ he can't handle boluses anyway. Other than that it's really not much different than an NG.
Yeh, those are common enough issues that they don't really scream mito. I mean, it could be, but nothing that makes my mito radar ping. You could ask your ped if he'd be willing to do a series of metabolic labs. Do one well as a baseline, one fasting, and one sick (fever over 101.5). This is probably the easiest place to start, but then again, drawing labs isn't fun.
Just talked to the wheelchair clinic, we're going to go pick it up on Nov. 4th.WOO HOO!
Yeh. And he can walk, just not for much distance. He just looks pretty silly stuffed into the Kimba now. We've totally just worn it into the ground. The head rest is flopping and wobbling all over the place and we've lost so many bolts that it's a wonder the thing hasn't just fallen apart. I did hear from them monday I think. They said that the third party said that the whelchair was declined but the spoke guards were approved. I spent a while calling the insurance...
Well, my kid has had over 10 barium swallow studies and hasn't started glowing in the dark yet. I totally think there ARE risks, but sometimes the benefits are greater. One thing they do to minimize the exposure is to pause the foroscope until they're at a point where they want to see something. Since my kid has had so much exposure to floroscopy and x-ray (10+ swallow studies, probably 12+ GJ tube changes, and so many x-rays I can't even count them) it is an issue that we...
what about a z-vibe? It's got changable chewy attachments and it vibrates.
still not here yet!!!!!! Last I called they had all but one of the parts and it hadn't made it all the way through insurance yet. It's annoying because it's taken for freaking ever!
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