Monday, September 14, 2009

An update on today’s events

We are home and looking forward to going to bed.  Lucy is home and sleeping like a baby in her crib.  Sophie is also sleeping as she had an exciting day riding in an ambulance and being spoiled by the ER staff at DuPont.  Jack and Megan had no idea what happened until just a few minutes ago when Drew and I told them.  They are so relieved that Lucy is doing better and that we did not have to be admitted!

Experience has helped us to learn what is normal and what is not normal when it come to Lucy.  Because of this I feel that I was able to react quickly to what Lucy’s body was experiencing.  We believe that the combination of her body being tired and the lack of nutrients put her body into metabolic crisis.  When this happens she becomes extremely floppy or hypotonic, she has starring episodes in which she does not respond, and she becomes dehydrated very quickly.  It is so freighting to see her get like this!  Thankfully she perked up after several hours on D10 solution and full feeds!   It was difficult to get labs on her today because she was so dehydrated, having labs drawn is very traumatic for her.  I wish there was another way!   All of her abnormal labs where typical abnormal labs for Lucy, nothing we are not already aware of.  Our experience with Lucy’s issues, knowing that she has mitochondrial disease, our very dedicated pediatrician, Lucy’s ER protocol letter, and the staff at DuPont helped to get Lucy back to baseline today, for that we are so grateful! 

I also want to say a huge thank you to all of our friends and neighbors who have come together to help our family in our times of need.  It means so much to us to know that you are there for us ready and willing to support us in so many ways.  I posted this warning before, knowing us can be hazardous to your cardiac health just ask our close friends and family.

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