Sunday Update

This past week has been quite busy and writing blog posts has slid off the to-do list for a couple of days.

Ellie is doing well despite cultivation a new line infection over the past week. She has bugs of two kinds in her central line and has been on antibiotics since Wednesday to fight them off which seems to be working well. This time her fever was much less than before and she was only slightly grumpy during the first day of the infection which is good for everyone. Gotta love that fish oil.

She was back to normal the next day and hasn't missed a beat since. She is still very slow on her feeding, which is fine for us and keeps her comfortable and happy. Now that we are going to be local, the rush is really non-existent. She'll eat when she is good and ready and until then we are giveing hr tiny bits of food by her tube and a couple of bottles a day to remind her what her mouth is for and avoid the problems of an 'oral aversion' when kids foregt how to eat. How a BRogan could forget this is a mystery to me, but I guess it could happen. She eats her bottles and the milk drains out her G-tube. Easy in, easy out.

We hope that the shipment of Cisapride will come soon and we will start that as soon as she is able to have it.

This may b e delayed because of her smart ass parents doing their homework.

You see, Abby and I read the literature on every drug that she gets, more or less. The other day we had a funny conversation with her doctors about contraindications for Cisapride when we caught a conflict between one of her anti fingal drug and Cisapride. The look on the doctors face was great, but they are getting used to it by now.

Us: Do we need to plan her course of anti fungals to be done before the Cisapride?
Doctor: Why woul;d we need to do that?
Us: Well one of her drugs is on the no-no list for Cisapride, we think.
Doctor: Wow, you guys are good. Nobody's parents ever read all of those papers and knows what is in them. That would be a good idea. we'll plan for that.

As they have told us all along: they know medicine, but nobody knows Ellie or her treatment like we do. Besides what else are we going to do with all of those hours in the hospital now that Abby has finished watching Buffy the Vampire Slayer?

SSDD. On we go into September, laughing and playing with our girl: