Her feed is at 15ml/hr and although we're heading in the right direction, it seems the erythromycin has lost its efficacy. As the other antibiotics were given to treat possible sepsis, somehow the erythromycin stopped working. Right now she's only pooping when we administer suppositories, sometimes not having a bowel movement for 24 hours or more (compared to the 4-8 of the previous week).
Her belly has been up to 49-50cm in girth at its worst. Comforting a baby who is this uncomfortable has been taxing on my patience and my positivity.
GI is at a loss and they're trying to pitch ideas for new pro-motility drugs, most with horrifying side-effects, or little-known research. They don't want to consider trying to add magnesium (my suggestion, as magnesium is something that contributes to motility naturally) because it's never been done before or studied thoroughly. This is also the answer I get when inquiring about pro-biotics.
So frustrating.
Some small glimmer of hope- I begin my home TPN training course tomorrow, however I feel like the only reason I'm being taught this training is because we had a sit down meeting (which came about as a result of an emotional breakdown in front of the doctor) to say we didn't feel as though a plan was in place to get us home.
I feel the training is just a charade to make it seem as though we're heading in a direction, even if the training is useless down the road.
I feel this way because when talked to about going home they still make reference to both being on PN and being PN free (if there was a true plan in place there'd be no ambiguity), and also because they've paired me with another family who is being taught home TPN and it's usually taught one-on-one (I read this as training cost savings, and covering their losses if/when they don't actually send us home on PN). Perhaps I'm reading too much into things (I'm a classic over-analyzer) but living here for 236 days has opened my eyes a bit to how things work here, add to the fact I've always been quite adept at reading people.
As you can imagine the days and long nights are wearing on me; the arrival of winter weather has really compounded my feelings of life-lost and hampered my spirit.
Missing another of my children's birthday this month, spending my own here next month, along with the uncertainty of Christmas has me down.
I find myself closing off and pushing people away and I apologize if I've hurt anyone's feelings; it's one of my least desirable qualities of how I cope.
Once again, we're praying for poop. Please join our plea.
