We had a wonderful Thanksgiving day in Henderson, TN with Michael’s parents, Rose’s great grandfather and extended family. We had a not so great night when we discovered Rose had developed a 103.2 fever on the car ride home! We took her to the ER & after much difficulty and pain for Rose they managed to put in an IV and did a urine catheter (ugh) & around 1AM got us admitted into a room. We have been here at the hospital ever since Thanksgiving. They ran all the viral tests hoping it was an illness, but we knew it was something more serious than that. Rose hasn’t really been herself for the past several weeks. She’s not been eating well or enough, been extra fatigued, low energy and sleeping a lot more & her bloodwork has been off for a while and she is anemic and has looked pale. She gets her blood drawn way too often and the liver team monitors her bloodwork closely.

We spent several days worried that the issue was something called PTLD. They have run SO many tests, done ultrasounds, a full body CT scan, taken countless vials of blood, etc. She was treated with IV antibiotics and that seemed to help. After a couple of days she started to feel better, eat more and has been perking up. She was on round the clock IV fluids. The 2nd night her IV catheter came loose from her vein & the fluid was pumping into her arm which got all puffy and tight! That was an unwelcome and disturbing awakening at 4:45AM for both me and Baby Rose by the nurse and IV therapist working to remedy the situation.

As far as diagnosis goes, the doctor says that “she continues to be our little mystery” and we don’t know what the issue was but they are going ahead and calling it cholangitis based on several factors. We are extremely relieved that the CT scan came back not showing signs at this time of PTLD. They wanted to put an NG tube in while Rose is here at the hospital, but we have asked to give her a week to see how she does with eating now that she is feeling better.