Saturday, June 25, 2011

June 25, 2011 - Day #21

Another day, another nurse, another story. Apparently, Riker started throwing up her feeds again last night so they changed her nutrition plan again - no one told me until I got to the hospital tonight. Ugh! She was back to continuous breast milk - 10ccs an hour which adds up to 1 oz every 3 hours. This is still not nearly enough. When I asked that she be taken off while I was there the nurse complied and shortly after I fed her, I went out to get some food with my husband.

When I returned to feed her, she had been placed back on the continuous feeds now increased to 15ccs an hour - 1oz every 2 hours. Again, I asked for her to be taken off these feeds so that she'd breastfeed. This time I was told that the orders did not allow for them to take her off... I'm supposed to feed her while she's having her belly filled with milk. Why is it that they are always making decisions regarding her feeds without telling me?

They are telling me that weight is a concern even though she's still up in weight since I brought her in. She feeds so well when I'm here and doesn't throw up. I'm so frusterated - I feel like I should be here all the time. We need her to get the ounces she needs directly from my milk so we can get her off the TPN. The longer she's on the TPN the more chances she has of damaging her liver.

Although the nurse tonight is not one I've met before, and the changes are very frustrating, she envokes confidence in me. She assures me that we'll come up with a plan and that I will be consulted about changes in the future. She seems to really know oncology patients and the weight/eating issues that are unique to AML patients. It's really hard for me to remember that Riker isn't healthy. Right now she really seems like she is.

We are now doing weights before and after I breastfeed to see how much she's taking in. (I already asked if they could/would do this and I was told no) Once we confirm that she's getting enough from me, I should be able to exclusively breastfeed when I'm here.

I really hope that we can get this part cleared up soon - the doctors need to me including me when they make decisions about her nutrition. It's one of the only areas that I feel like I have some control over and my knowlege and input is as important as their education.

1 comment:

  1. Did she vomit from breast milk that came from a bottle? If so they may have her laying to flat when she takes the bottle and their for she's getting to much air. Just a thought! I know things will work out and that eventually she will be willing to eat for those wonderful nurses she has :)!