Hopefully this is the last time the words "hospital stay" will be in the title of my postings. After a few days in Va visiting with cousins and grandparents, we returned to UNC yesterday to do a pH probe for 24 hours to determine if Emily could be having silent aspirations which could be causing some lung function issues.
After the team talked at length about Emily's cultures-she is still culturing the mycobacterium abscessus and aspergillus--it has been decided that we will treat the m.abscessus again because her right lobe is still filled with secretions and her PFTs remain in the 80s. One of the antibiotics will be changed this time, but it does mean another six weeks of IVs. Needless to say Emily wasn't thrilled with this news, but hopefully this time will do the trick and we will get her lung function back to where it needs to be. Emily continues to amaze me every day--she, and all those that deal with CF, have a strength in them that is beyond any strength the rest of us have or ever will have!
On a happy note we had a great time in VA--picnic, miniature golf, and the roller skating fundraiser at Rollerworks (Hugo's to those of us who grew up in Fauquier County). This event was to raise money for our Great Strides Team for the walk in May. It was a great night--enjoyed seeing a lot of old friends and family as well!
3 comments:
Emily is such an inspiration to me as I try to raise my children. She displays such a strong spirit in spite of everything she has faced and is facing due to CF.
You are such an inspiration to me as you balance "normal" life and caring for a child with CF. There is nothing easy or simple about it. You are amazing.
Thanks Rebecca....we surely take it one day at a time and we have entered a new phase of CF that is taking some getting used to, for sure! And BTW, I think you are amazing...you have two kiddos dealing with CF....that is a balancing act!
I wonder how is she? I hope everythings fine!
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