What a difference a day makes. Yesterday was touch and go. She slept most of the day and it was nearly impossible to rouse her. Around 5pm she awoke and was amazingly coherent and wonderful but then spiked a fever. She did not sleep much last night which can also be attributed to her chronic endocrine and dehydration issues but certainly not helped by the fever. The fever persisted through the morning and daytime today going even higher. The ICU doctors started to be concerned about the possibility of meningitis and were considering tapping her shunt for a sample of brain fluid for testing. This all made us very uncomfortable which translates as me having a breakdown out of sheer panic at the thought of both the tapping and the meningitis. They started treating her with even heavier antibiotics than she was on before. They have also started her medication for the diabetes insipidus which is now determined to be a forever condition. Thankfully her fever has since subsided, she woke and ate a terrific dinner including and entire piece of chocolate cake and cheesecake. I have often said chocolate cures everything and I am sticking to that :) She is still being tested hourly for any changes in sodium levels by poking needles into her tiny little fingers. She has been here for 14 days with a new poke every hour. I cannot bring myself to do the math. Her poor fingers look like pincushions to which she has never complained. We gave her a bath, changed her pjs, brushed her teeth and washed her hair. She is now resting like an angel. I never knew how strong someone could be until I met Lily. She continues to take my breath away with her whole being. I love her so much that my heart is actually sore in my chest. She continues to show us the way. So much love to you all.
Posted on: Mon, 05 Jan 2015 04:03:05 +0000
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