The Second Day – January 17, 2013

Cassie and Teddy, a gift
from her sister Ariana

I went into her room at about 2:30 AM and she had the nurse’s hand and was complaining because she had no food or water. Whenever she requested water or food, and the nurse declined and explained why she could not partake, Cassie repeatedly said “No no no no no!” – quite loudly. I’m not sure if she was using sign language, but it just made me weep as she put her hand to her mouth and she indicated what she wanted. It was like she was a little kid again and could not fend for herself. I finally went back to bed and woke up around 5:00 PM and could not go back to sleep. I had this overwhelming feeling that I was losing my wife and I had a minor panic attack and felt like I was hyperventilating. The parents came to the rescue and that day just flew by as the first. The days are blurring together.

The first few days were rough, as she had multiple MRIs, CT scans, an X-ray as they put in a feeding tube as she was (and is) incapable of drinking and eating on her own. She has so many IVs and tubes connected to her, with steroids, heparin, sodium chloride, a central line (which at one point she pulled out and so they had to reattach it to her left forearm). She has had many physicians and doctors attending to her, namely Kevin Call (the neurologist), Steven Call (her rheumatologist), Heather Harrison (her family doctor and OBGYN), Helen Feltovich (high-risk OBGYN) and others. She has had great nurses and good therapists that are helping her. It has been frustrating for all parties because she is still unable to fully communicate speech-wise. She lost the ability on the 17th when they had her take a walk to try to begin physical therapy. Since then it has taken quite the effort to improve. 

Contributed by Christopher Holt

The following is the text of a message sent on the 17th by Amy Lilly, her mother:

"We had a very scary event in our family yesterday. Cassandra was sitting in class and apparently had a stroke. This is directly related to her lupus. They have done everything they can for her medically now we just have to wait and see how her body takes care of the remaining clots. She is in the Neuro Shock Trauma ICU at Utah Valley Hospital. It is a locked unit with limited visitors. She needs all the prayers possible."

Contributed by Amy Lilly