Starting to Eat Again

Before I start explaining about Annie's feeds, I just have to say WE LOVE MELATONIN!  Annie has been incredibly irritable since starting prednisone last Friday, so last night we got her some melatonin to help her sleep more than 2-3 hours total at night.  She's never had melatonin before, so I wasn't sure how she'd respond, but it worked beautifully!  However, now that it's all worn off, Annie has been extremely irritable and fussy again this morning, just crying inconsolably.  I feel so helpless, but at least we made it through the night without these crying spells.  I will definitely be asking for it again tonight!

The big excitement yesterday was that the GI wanted us to start her feeds.  She hasn't been fed anything at all for 21 days and when she was last fed she constantly threw everything up, even at just a rate of 10cc/hr.  The ID doctor had said earlier today that she didn't want feeds started for another few days so they can see how the lower dose of vancomycin is impacting her diarrhea.  We told the GI this when he came in later and he didn't seem to care what the ID doctor wanted.  (Again, I'm so frustrated that the doctors aren't consulting more with each other!)  I was a little nervous myself about starting Annie's feeds since she's still having 2-4 episodes of diarrhea each day even without food going through her, but the GI felt that getting food going through her gut will help it start to heal and help get it back to how it's supposed to be functioning. 

So we started feeding her last night.  They're starting her back on neocate--an extremely gentle and completely broken down formula that should be easily tolerated.  And not only are they starting her on such a gentle formula, but they are starting her on it at half-strength (diluted with 50% water).  She's starting at a rate of 10cc/hr and we'll see how she tolerates it.  (For those of you not familiar with cc or mL measurements, 10cc/hr is the equivalent to 2 teaspoons of formula slowly running into her stomach each hour with a pump.)  Her normal rate at home when she's healthy is 85cc/hr, so we are starting extremely slowly and have a long ways to go to get her back up to her normal rate on her normal full strength nutren jr.  But so far Annie has tolerated these slow, diluted feeds just fine.  I think the steroids have decreased her inflammation enough that she is able to keep these feeds down.  So we are very encouraged.  However, with food now going through her stomach, the diarrhea will most likely increase, but we've been expecting that and have been told that her diarrhea could continue for 2-3 weeks as her gut gets used to food again and starts being able to absorb her feeds better.  So unless Annie decides to change things, the plan is to slowly start increasing her feeding rate every few days, decrease her TPN rate, and continue to wean her off the vancomycin.