Azer's culture came back clear of Psuedomonas, but his doctor wants Azer to continue with the Tobi. Azer's cough has been improving slowly. It has been very difficult waking up in the middle of the night to flush his tube, and to give enzymes at the end of the feed. Then, we have to wake up extra early because the Tobi takes FOR-EV-ER to finish.
Why do you have to get up to flush the tube? Just asking cause we don't do that.
Originally we did 700 ML over 10 hours but God bless him sometimes he sleeps longer than that! So now I do 70ML per hr on infiniti so if he needs to sleep in he isn't awakened by that horrible beeping and he gets a little extra go-go juice! What a simple and boring life we lead!!
Yay for no pseudomonas!!!
Wow...how do you do the enzymes with the tube and when? If it's dripping all night how do you decide how he gets his enzymes spaced out. Do you wake him up? That's something I haven't really thought about when we discuss the tube. Hunter had an ND tube when he was a baby for about 6 months, but we used viokase powder at the time instead of enzymes (he couldn't have anything by mouth at the time). hmmmmmm.
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