I'm not sure if its just because I'm so tired of the days with no progress, I'm worried we made the wrong decision, mother's intuition or that Payton is just sort of caught between two medical groups where no one of any authority is really looking at her situation and making an informed decision.
She's still not being fed.
It wouldn't be so bad but her IV's and her PICC lines keep failing. Without feeding her we rely on either method to get nutrition into her but she keeps getting pushed back on her feedings and no one is really giving us an answer as to why.
Today I have been challanging that decision and I think the surgical team is avoiding me or ignoring me...not sure what.
Basically her surgeon said 'a couple of days' after surgery for her to start feedings again. Sunday (from Friday) was a couple of days. On Sunday we were told Monday. On Monday we were told Tuesday (but also told that the surgical instructions from the surgery actually said to start feeds after the weekend so our 1st guestimate was off by one day).
Today they're saying tomorrow (Wednesday). So they have now pushed her feedings back 2 days. It wouldn't be so bad but now her head IV is failing and they are talking about another PICC (as mentioned yesterday). With Payton's issues, placing another PICC line requires a whole lot more poking and a whole lot more x-rays - not something I want to do if it can be avoided (and it possibly could have if we were able to start feeding yesterday).
So my question has been why the delay in feeding.
There are so many parameters surrounding this that its hard to keep them straight. I want to include it because another curious CDH parent may find it helpful but its so complex its actually hard for me to keep straight. If I can managed to outline it so that it makes sense I"ll include it.
Essentially, I haven't been given a logical answer to holding off feeds except that her stomach secretions are high.
In the meantime, here's a picture of Payton and her cousin Kristin (who just flew in today and is the 1st time she's seen Payton).
3 comments:
Keep questioning them Renee. You are a concerned mother and need those answers. You are remarkable. I don't know how you manage to juggle it all.
Poor little Payton must feel like a pin cushion by now. She is a tough little girl. Keep positive, love Grandma Helen
Hello, Renee
Payton looks beauty good; considering all the hookups attached to her.
I pray & have Faith that a doctor decides to start Payton's feeding, tomorrow!! & it is successful!! Yaa
Love you, Auntie Bev
I would call a health care meeting with all of Payton's doctors and primary nurses to be there and get some answers. I did this twice when Ian was in the NICU...our social worker was able to arrange the meeting where all of the medical team could be there. You are Payton's voice and advocate...I would keep questioning them until you get answers. I will keep your little girl in my prayers and my fingers crossed she gets some milk in her tummy soon and that all goes well.
Stay positive and we are sending Payton well wishes!
Tracy, Ian's mom
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