It has been a difficult day… to say the least. We arrived in the ER at around 9:00 with the knowledge that we were getting admitted. I had a feeling that Lucy was getting a fever when I put her to bed last night, higher than normal heart rates clued me in, so at midnight I stated the process of doing laundry and packing. We woke this morning at 5:30 to run an IV infusion, and have been running ever since.
Lucy had a very high fever 104.9, this fever is causing her to have tonic colonic seizures that are scarring the crap out of all of us!! We are very suspicious that Lucy has a Line infection, Dr R even went so far as to say he was 95% sure of it.
Her GI system is completely shut down, what very little function she has, which means no feeds or PO meds. We have converted as many of her meds IV as possible, we have already done this at home. When going over her med list with the nurses I was asked “so she takes twenty-five different meds?”, my answer, “umm…yes, but not all at once or all the time.”
Right now our goal is to monitor the number and duration of her seizures, try to keep her fevers down as best as possible with IV Toridol and rectal Tylenol, and keep her as comfortable as we possible can.
(I took these pics last Thursday. Isn't’ she beautiful!)