Chinese proverb

"An invisible red thread connects those who are destined to meet, regardless of time, place or circumstances. The thread may stretch or tangle but will never break."
(ancient Chinese proverb)


Sunday, June 29, 2014

Tube Feeding update

Audra is adjusting well to her night time tube feedings.  She knows the routine now and will help me get everything set up.  She knows which connection goes where, how to clamp the tubing and how to open and close the ports.   

The first week or so, once she was hooked up to the pump she would lay very still until she eventually fell asleep.  Either she was still a little bit sore from the surgery, or she was just a tad bit afraid of what would happen if she moved around while connected. 



Unfortunately, she has passed that stage.  Now she moves all around, to the very limit of the tubing length.  And she has figured out that she will get unhooked from the tubing/pump if she needs to use the potty.  So now she signs "potty" over and over, even if she just went potty.  It is difficult for me to deny taking her to the potty when she asks....but after the 3rd or 4th time in less than an hour I start to get suspicious. 

We have only "fed the bed" once so far...which resulted in a very messy wake-up call.  This happened because somehow the side medication port of the tubing popped open and the formula chose the path of least resistance when being pumped in...which was out the side port instead of into Audra's tummy.  Since then I have taped up the connections pretty aggressively each night. 

Sometimes I need to start her night time feeding a little earlier than bedtime.  For instance, if she stays up later than usual for a special occasion or if I need to wake up super early for work the next day, I want to feed to be finished so I can disconnect her before I leave.  In these instances Audra has a little backpack that holds her pump and bag of formula while it is running. 

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