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Weight Check

July 28, 2009

I am happy to report that Lucy is gaining not losing weight, albeit every so slowly .  I wish someone would tell me I’m not gaining weight  fast enough!  Lucy did lose weight post surgery, but has gained back what she lost plus an ounce or two!  Nonetheless, we need to get Lucy gaining a little faster.  Lucy has  moments during some days where she tolerates a higher feeding rate and moments where you just need to  slow down the rate or shut off her pump and give her a break.  In the beginning when we started all of this enteral feeding stuff it was not always easy to know when she has had too much.   Now, months of experience has allowed me to pick up on her “I’m too full, my belly really hurts me” cues.  Lucy can’t verbally tell us that her belly really hurts her, but can express herself quite clearly without words.  When she is full she has a very distinct cry/scream, she will often slow down and lay on her back, and or lay on me and just plain be miserable.  She can get fitful(no pun intended) when she feels full,  it is difficult to find ways to comfort her when she gets like this.  I wish we could avoid these moments all together, but unfortunately we need to try and push the rate on Lucy’s feeds to see is we can’t get her gaining a little faster.  We are going to give it another month and see what we can do about her feeding rate.  If this doesn’t work then I think that we are going to discuss converting her G tube into a J tube.   Lucy is unable to tolerate bolus feeds, this is where you push several ounces of food with a syringe into her tube every few hours, so she is on continuous feeds with her pump approximately 22 hours a day.  The down side to J tube feeds is that you can only do continuous feeds, but since that is all we are currently doing with Lucy than I think that this might be an easier option for her.

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