Monday, March 12, 2007

A new chapter, a new set of rules

Now that we know that Ellie's bowel is not dilated and food passes through easily and quickly, we need to slow things down to make sure that she gets the most out of the food as it passes through.

Maximizing the contact time between the food will hopefully decrease the amount of food that comes out of her ostomy which will also help her hydration since she won't be losing those fluids. We were encouraged that she was drinking 100ml bottles last week but now realize that they may have flushed through her like a toilet without any real benefit because the food was going through so fast.

Over the last four days we have changed our approach to feeding and now give Ellie her food over a long period of time. Instead of getting the 500 ml into her in as little pump time as possible we now have her on the pump almost all of the time. We had her up to 60ml per hour last week which had her on the pump for only a few hours each day. Now we have her at 30 ml per hour for 12-14 hours a day. It is a pain to have the pump on so much but that's a minor hassle compared to the other things we deal with.

Such is life with a short bowel.

This new approach has shown mixed results but some signs are showing that she is absorbing more and passing more down her colon as well.

We are trying to up her nighttime feedings as well:
For some reason her body shuts down at might and won't handle more than 5 or so ml per hour. If we can boost her nighttime tolerance it will add food to her system and boost her ability and adaptation. We'll see what sleeping Ellie can do. Right now we are at whopping 8 ml per hour at night. it all adds up, though.

We have also been working on the next step towards losing an ostomy as well- plugging her ostomy periodically to urge food to divert down into her colon instead of out the ostomy. This involves inserting a soft silicone plug into her ostomy for a few hours each day. We're not sure if this is doing much but her output goes down significantly when she is plugged so it must be doing something right.

What we are realizing is that we are back into the land of very slow progress again and may make improvements a single ml at a time.

Onward and upward hopefully with minimal slides downward.


Martha Brogan said...
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Martha Brogan said...

For 11 months I've read and reread and been overwhelmed by all the technical aspects of our girl-ostomy output and mobility. And then there Ellie is in her Red Sox cap- she's the cutest girl! Maine is waiting for her to come.

kate said...

That Red Sox picture makes me proud. The first time Ellie was on the Boston news for the Children's telethon, the anchors noticed her Red Sox bink and said "some day she'll be going to Fenway with her Dad for a game." That was what, June? And here we are in March and she's ready. Of course, we have to give it some time to see if the pitching is worthy of her presence this year.