Friday, June 8, 2007

Feeding tube update

I could find nothing wrong with the pump or external tubing.  I did all of the checks and even ran the pump into a bottle and it worked just fine.  So, even though it wasn't what I wanted to do, I removed her feeding tube last night about 2:45am.  She was able to sleep through me doing this - with a lot of moving about.  I let her sleep through her next feeding and planned to put it in for her 9am feeding.  It was probably too long to let her go, but I hated to wake her to put in a tube as it's just really hard these days.   Her gag reflex is working very well and it makes this a real challenge.

Catherine came over to help and it was hard getting it in! I tried repeatedly to get it past her gag reflex and it just wouldn't go. I removed it a couple of times and just as I was thinking I might have to take her to the hospital to have someone else do it - it went down.

The tube near her nose keeps coming out a little and I'm hoping that it won't be like that as it will make it easy for a little finger to grab onto it. Just praying that this one will stay longer. It's just hard on both of us.

Thank you for your prayers. Feeding continues to be a big struggle here. I'm not seeing much to be encouraged about, though I'm still hoping. More and more I can see some benefits to having the Gtube surgery - though the thought of another surgery is not one I can dwell on for long.

Love to you all,