Painful...

Lucy, Lucy, Lucy…oh Lucy!

My mama heart aches for you and what you have had to endure and what you are having to endure at the moment.   It's painful for me to witness you in pain! 

I will write in more detail about Lucy's most recent issues in a later post.  For now I will simply say that Lucy's bladder pain is beyond what any of us who know and love our girl ever thought possible.  Like many of the organs in Lucy's body, her bladder is affected by her disease and as such is another deteriorating organ system. 

Pain control is proving to be extremely difficult.  We have been increasing her pain meds dramatically over the weekend all in an effort to make Lucy's pain tolerable.  Keeping Lucy breathing and her pain tolerable, it's difficult. 

I am currently watching and listening to our girl struggle to breath, she is retracting so badly.  We just made the switch from her regular oxygen to Vapotherm,  a high flow oxygen delivery device.  She is proving to everyone that she is in need of a lot of breathing assistance at the moment. 

Prayers for Lucy's peace and comfort continue to be needed.