Discouraged

We don't have a great update for you today. The last 3 days have been fairly bad with diarrhea. Just when we have half a day without any dirty diapers and get hopeful that we're improving, she explodes. Tonight it was in a store with friends. Whitney was holding Maggie when it happened and ran to the bathroom, but when she was about 15 feet away, Maggie's diaper failed and a huge pile splattered on Whitney and on the floor. It was very runny and messy. And we seem to be back to having a huge quantity for some of her poops.

Maggie was tired tonight and asked to go "nigh, nigh" which is rare for her. We weighed her (the best that we can from home) and we're pretty sure she's lost 2 pounds in the last week. That would be 3 1/2 down from her peak on TPN. She is looking skinny again, too. Just as in the past, we need to break the cycle that causes our problems. The diarrhea leads to weight loss, lowered nourishment, which seems to make the diarrhea get worse. Can we break the cycle on our own with our tools at home (BRAT foods, immodium, etc.)? We're going to call the clinic in the morning to see if that is worth a shot or if they recommend intervening again with a feeding tube or TPN.

Typically they wouldn't go to TPN unless the feeding tube and other efforts have been tried--but the feeding tube seemed to exacerbate the diarrhea problem to an extent in the past. We'll see. The TPN was a miracle worker before, but it is usually more of a last resort kind of intervention. And it would require continuous access of her port (again).

Will we have to cut off her food again? Will they start TPN or a feeding tube? Will they let us try a few more days on our own? We'll find out tomorrow.

I'm convinced that Maggie's acting a little irritated (from a tough week of chemo, steroids, then having her body beat down by the diarrhea). She's short tempered and doesn't have the joy that we want to see from her.

We're bummed down here. Concerned, frustrated, worried, feeling sorry for ourselves. Life obviously is not fair.

We'll update if anything happens tomorrow.