is nothing at all apparently.
Ellie has had a great two weeks since we went in for her last upper GI contrast study. Her ostomy is behaving, she is pooping for us almost every day with only a bit of 'encouragement' (a glycerin suppository) every few days, and her feeding is advancing to a rate that we haven't seen in a long while.
And what great thing did we do after running a load of barium through her and coming up with a plan for medications and other elaborate two-day inpatient tests?
Almost nothing.
Really almost nothing except reduce the concentration of her Elecare from 30 calories per ounce to 25 calories per ounce.
Instead of dumping the Elecare and a lot of other fluid when the concentration was high, she now is holding on to it which is great.
Very simply it is like she had chronic diarrhea through her ostomy when she was on 30 calorie formula (you would too if you only ate sugary syrup, right?).
So now we wait and watch and slowly increase her feeding rate as fast as she can handle it. The funny thing is that by reducing the calories in each ounce we can now give her a lot more calories. Sort of a two steps back and three steps forward- another round of short gut cha-cha.
And all of this because our compounding pharmacy still hasn't shipped her meds. If you are in the Boston area, try and find another pharmacy than J.E. Pierce in Brookline. They screw it up more than they get it right.
Really. I made three trips for a single prescription not long ago. and we've never had an order filled correctly, on time and without a hassle.
I guess I need to call them and tell them to keep their reglan. Things are moving just fine without any chemical help.
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5 comments:
Excellent news! So glad to hear it. Go go gadget gut!
That's great! So glad to hear Ellie is doing so good!
Ha- we hated dealing with JE Pierce! Would you believe it, we made a solid gold discovery last year- a tiny little professional compounding pharmacy about 1 mile away from us in Attleboro! We've never looked back! The joy, the bliss, the ease.....
And I completely agree about hte Zevex vs other pumps- now that Eithene can finally wear her backpack the freedom is incredible! No child deserves to be anchored by 2.5 feet of tubing to a huge clunky heavy machine when the teeny Zevex is available. SOme insurance companies are ridiculous.
Anyway, SO glad to hear that Ellie is doing well with her feeds after a calorie reduction. We were having an awful time getting Eithene the cals she needed (due to volume restriction) because she couldn't handle highly concentrated neocate. Finally we stopped upping the concentration of the neocate and increased Kcals/oz with Polycose instead- a carbohydrate supplement. Probably not an option for short-gut kids, but obviously Ellie doesn't need it anyway! Go girl! :)
Jessica
www.caringbridge.org/visit/eithenerosehilliard
Hi!
So glad things are going ok..hope we can link up soon across the water!!
Hi how are things now?
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