No news is good news right? Well no not really. Sorry I didn’t update sooner, but I was really hoping to deliver good news. Unfortunately we are now on to one of our worse case scenarios, Noel didn’t handle the pedilite at even 5ml per hour. Since she couldn’t handle the pedilite she is now on gut-rest and is getting 100% of her nutrition through her IV. She is going to be on TPN indefinitely, so sometime this week they are going to place a broviak (a more permanent central line to receive her IV nutrition from. As of now they are diagnosing her with low-motility (things move slow ) from her stomach to her bowels, sadly this is not associated with her underlying Muscle issues; Muscular Dystrophy does not typically effect the smooth muscles (heart, liver, intestines) so she may have a completely separate intestinal issue . We will continue to slowly try to feed her through her intestines; it’s a very slow process so it could be months before we’re able to feed her formula again. That's all for now,
Tina
Steps for Noel
My feet were burning, the sweat started to drip into my eyes and my throat was as dry as a desert; but I didn’t even care. No pain or discom...
2 comments:
Ug. Poor Noel. I hope she can rest well and begin tolerating her feedings soon. We're praying for her comfort and your peace of mind.
Jenna
Tina,
I am sorry things got worse for you. I didn't know you lived four hours from the hospital. Praying that all will get better soon. Hang in there!
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