We arrived home this evening. As always, we are trying to get settled back in to our routine. Lucy is on an every six hour antibiotic schedule which means Drew and I will be taking turns infusing meds throughout the night. Lucy has over two dozen meds that we give a day, each taking at least fifteen minutes to infuse. We run a pretty tight med schedule around here to ensure that Lucy gets her meds and I keep my sanity.
Lucy’s blood counts are falling, we are going to wait and see what her body does over the next week. So far blood cultures are still negative. We drew separate fungal cultures this time which can take up to 48 days to grow anything. Lucy had a new gj tube placed today because it would not hold an extension tube in place anymore and was leaking bile everywhere that Lucy went, yuck. When that was done and delivery of our meds were ensured, we were discharged.
We made it through another admission. There are always new challenges that arise with every admission, but we made it. Thanks for all of your thoughts and prayers, love and support. We could never do this alone!
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So glad for you that you are back home! Praying today is a good day for everyone. :-)
Happy to hear that you guys are home!! Hopefully i can get over and see you guys soon. God Bless.
I wanted to let you know I'm praying for Lucy. My own daughter is about the same age and also has Mito.
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