Peg Tube & Pedisure 1.5

22 Feb

First of all, I am going to start using my daughter’s middle name (Noel) instead of always saying “my daughter.”  She actually goes by her beautiful Ethiopian name, but I will use her middle name here.

I thought I would write a little about our experience with Noel’s peg tube and weight issues.  We got her peg tube in December to help with giving her HIV and seizure medications and to help with weight gain.  After the getting through the yucky stuff at the hospital and the initial sadness that we had to do this, a peg tube has been helpful. It completely took away our medications problems.  We get all her meds down 100% of the time.  Yay!

However, it has really not helped our weight issues as much as we had hoped for, or at least not yet.  Noel has actually lost weight again this month.  She has not been able to tolerate enough Pedisure to put on weight.  They wanted us to give her 4 (8oz) cans a day.  But she throws up if we give her over 14oz  in a whole day.  Our primary doctor want us to go back to the GI doctor for more testing to see if she has other GI problems like delayed emptying.  Another draw back to the peg tube is that she basically is not eating anything.  Feeding her through her tube keeps her full enough that she has no desire to eat at all. 

We had to go to increasing her calories since she has not been able to tolerate a larger volume of Pedisure.  This last week we have been mixing a package of Carnation Instant Breakfast and Benecalorie into her daily goal of 16 oz of Pedisure as suggested by our nutritionist.    Our doctor also recommended switching to Pedisure 1.5 (which we had to order) and it should be coming tomorrow.  Hopefully Noel will put some weight on with Pedisure 1.5, or the next thing they want to try is a feeding pump at night.  We can’t imagine trying to get Noel to sleep attached to a pump.    We hope they will ultimately be able to find something to explain her eating issues.  Maybe there is a physical reason she does not want to eat.

I am grateful for the peg tube, but have to admit I am sad about it.  I am sad that Noel has to have this “thing” poking out of her.  It seems so unnatural.  It seems so medical.  It seems so sad.  A peg tube in a little belly is sad, and yet it is necessary.

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