If at first you don’t succeed try, try again.
We have been trying things and so far are progress is very slow, slower than we had hoped. As I said before since we are now feeding Noel’s intestines we have to start out slow. If you feed the gut to fast a condition called “gastric dumping syndrome” can occur; this happens when you introduce food to fast into the gut and it can not keep up so it gets ride of all of the food (diarrhea) and none of the nutrients are absorbed. So we have been giving Noel her food at a rate of 10ml (which means she gets 10ml of food an hour; an ounce is 30ml just to give you an idea of how little that is.) The plan was to increase her rate by 5ml every 12 hours. She was doing fairly well at 10 and 15 but when the rate was turned up to 20ml/hour was when she started to have more retching and more bile drain from her stomach. Also, we gave her medicine into her stomach at 10am and it was still coming back out unabsorbed at 2:30pm.
So now we turned her feed back down to 10ml/hour, we might have to increase by only 1ml every 12 hours. Since her problems started so late in the day, we probably won’t hear form her GI Doctors until the morning to see what they want to do. Until then she is still receiving her main nutrition through TPN and Lipids, which is nutrition through her IV. This is so frustrating; I really don’t know what else we can do. I hope we can try something that will work. Thanks for checking on her and thanks for your thoughts and prayers!
Tina
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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...
4 comments:
I am hoping and praying the docs find a solution for sweet Noel. I am so sorry you guys are having to deal with all this. Let me know if there is something I can do.
Love,
Alicia
Tina - just wanted to let you know I'm checking in and you and Noel are in my thoughts and prayers. I sure hope they can get Noel's feeding issue figured out soon as I'm sure you are ready to get out of the hospital.
Hugs,
Ann
Oh, I hope they can figure out a solution soon. I am sure this is a rough hospital stay. Your in our prayers. Good Luck.
We're praying for you guys. That seems like such a slow rate. Your post title is so appropriate. I hope you can get her her comfortable soon.
Jenna
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