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July 13, 2013

It's finally quite in room 7 tonight, dare I say even a bit serene.  Lucy's music, which we loop 24 hours a day wherever we are home or in the hospital, is playing in the background.  The sound of her oxygen humidifier bottle sounds like a zen like fountain, the suction white noise is even soothing to not just her but me as well tonight, and for the first time in days I can take a deeper breath.

Lucy remains fever free, and as long as she does our plans are to transport to Hopkins on Monday morning so that she can have her stent removed via ERCP.  The risks with stent removal are the same as with stent placement, with one exception, if the stent has become embedded in the wall of the bile duct and won't come out.  We are going to pray for that not to be the case!  If all goes well we are planning to transport back to DuPont sometime after her procedure where she will recover in the comforts of our "home away from home".

There has been a lot of talk about replacing Lucy's existing gallbladder tube with a softer more flexible tube.  Lucy is consistently complaining that her "new tubie" hurts.  It is a bit stiff and rigid and as such it is pulling and very sensitive to movement.   Changing her tube is something that we knew would need to be done, but it's also something that she will have to be put to sleep for and as such it makes it a bit more complicated.  We will evaluate where she is at next week post stent removal and come up with yet another plan.

I am looking forward to sleep tonight while the wonderful nursing staff take care of our special girl for me.  They are going to do round two of TPA tonight (last night was round one) and go after the other lumen on her central line.  Things are building up inside of her lines causing occlusion alarms on her pumps.  We can not afford for he life line to stop working, therefore we are quick to respond to any slowing.

Thanks for all of your love and support thoughts and prayers, we could never do this alone!

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Helen A said...

Sleep well Lucy and Nicole 😌