A chronicle of our trials and triumphs as we battle Hyper-IgE syndrome (Job's disease) with our baby boy Sam.

10:59 PM

Day 11

It's a beautiful day here in Minneapolis. We spent the morning enjoying the view of blue skies out the 7th floor window, trying a thousand different ways to get Sam to eat.

Dr. Shapiro ordered his feeding tube shut off so he would be hungry, and his IV was turned down to TKO (just enough flow to keep the vein open) to make him thirsty. No sooner was I on the phone to Esther explaining the turning down of feedings than Sam snagged the 1/16th of an inch of tube that was not taped down and ripped it out of his stomach. I didn't know how long it was, but knew I had more line in my hand than was in his nose. By the time the nurses arrived, the tube was completely out. Sam and I were both sprayed in some unpleasant combination of bile, prevacid and elecare. Guess we won't be needing that anymore...

Our neighbor Danielle (who happens to be a speech therapist) had offered to sit with Sam for a while so the other kids could enjoy some mom & dad time. We took her up on the offer, so while we went for a walk around lake Calhoun and ate sloppy ice cream cones, Danielle got Sam to take 1.5 ounces of Elecare! May not sound like a lot, but it really helped us help him get back on the horse, so to speak.

He ate another 2.5 ounces before bed (via a straw), so we're making some progress.

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