Decisions Decisions – January 27, 2013

Having a CT done that Dr. Call wanted. MRI on Monday. Slight urinary tract infection, now on antibiotic. She was happy to go to CT. Hope she isn't too disappointed when they take her back to her room. She felt good enough to look outside when we passed the window.

Contributed by Amy Lilly

Over the past few days, mainly since the 24th or so, she has really been talkative and is forming more vowels and has added “no” to her vocabulary. She has become more and more enthusiastic, and has smiled and become more aware. As this ability has improved, so has her awareness and understanding of what is going on. That means being more emotional. She has cried a few times, a lot due to her inability to communicate and be understood. She has used the iPad Mini a few times to color and to watch films (which she now selects by herself). I have spent so much time in the cafeterias and eating junk food, rather than being at home eating with my wife.  I would love to treat Cassie to Panda Express or Art City Trolley when we are able to leave and she can eat.

At one point in time, I was severely dehydrated and vomited in the 3^rd floor cafeteria. I spent the next few hours in the ICU waiting room trying to recover and vomited twice more. I ended up going home early and the next day at home laying down recovering. Worth noting: this ended a streak going back to when Cassie and I were dating where we did not miss a day seeing each other. Many years of time spent together. All good streaks come to an end. So many people have reached out with their support, whether it is visits, food, prayers and temple visits. Her name is in many temples across the United States, from Los Angeles to Manhattan and many a place in Utah. I have not known more support and have felt more love from friends and family. I have also gained a greater understanding of the gospel, such as “the songs I cannot sing” and the meaning of trials of faith. I thought a few things would be a lifelong trial, and this might trump those. She has made much improvement and the doctor’s outlook is optimistic. The therapists have been wonderful in their attempts to help her regain her former abilities.  It will take a lot of time, but it will be worth the effort.  The growth will also be beyond just the therapy, but will reach into the lives of those who are connected to Cassie.

I was able to take care of all the school responsibilities: signing up for leave of absences, authorizing me to be in charge of her account and finances, and making sure refunds and scholarships are in place. Unfortunately I lose my scholarship because it is private and those cannot be deferred. We will have a new addition to the family as well, expected in August. I am currently worried about insurance coverage. My dad and I have sat down together and made the appropriate visits to make sure we are still covered for the imminent medical bills. She was not employed for 12 months at her job and so she does not qualifying for FMLA coverage. I qualify at my job for FMLA coverage. So does Cassie go on COBRA coverage or can she be switched over to another policy immediately? I called my HR department (but I want to verify it again), and they said that this would be a qualifying event to obtain insurance. Unfortunately this is something that I have to deal with and have to settle fairly quickly, as her coverage ends January 31st and it is imperative that coverage continues, for the preexisting condition of her pregnancy and continued coverage while she stays in the hospital.

Another thing to determine is whether or not we need to move. I guess the question really is when. The stairs will be difficult to navigate for Cassie, particularly if her right side continues to be troublesome. Most likely we would be moving in with my parents. I know her parents would love to have us, but there is no room and it would be too hard. My parents said they would give up their room and move downstairs, but that would upset the dog. The other question would be: where to put our possessions? Both grandparents have offered their garages as storage space. This is almost too much for one person to handle at my young age. Fortunately I have many people to support and offer their services.

As It Get Worse, Turn to God – January 24, 2013

Flowers that Ariana & Ethan
purchased for Cassie

In between today and the 17th, Cassie suffered additional strokes and, as a result, she was paralyzed on her right side. She has lost her ability to speak, to move her right leg and foot and to lift or use her right arm and hand. This has caused a great deal of heartache and frustration as it becomes increasingly more difficult to communicate with her and for her to be able to adequately express herself. As things progress, she has begun to utilize hand motions with her left arm and hand, whether that is to have what we called "swabbies" (tiny sponges on a stick that we soak in water), to turn on and off the light, to come sit by her, etc. Even with this increased communication patterns, she often sleeps. She likes to entertain some visitors, and some close friends we have let into the ICU room, but most stay and visit us in the waiting room. Much thanks to those who visited: to comfort, to bring food, and to just be there to share in our time of need.

Unfortunately, flowers are not
allowed in the ICU rooms

As I have turned to the scriptures and to prayer (albeit not as often as I probably should), I have appreciated the feelings of the Holy Ghost and the reassurance from heaven. I have tried very hard to make sure that I have not questioned the Lord as to why this trial has happened and why to a precious daughter of God at such a young age. I have sought to learn why this is happening and what is to be gained from the experience.  I know that Heavenly Father and Jesus Christ have a plan established, the wonderful plan of salvation that allows families to be together forever. It helps to be able to look beyond this mortal life into the eternities. I wish I knew what purpose this serves; at the very least I know "that the works of God should be made manifest" (John 9:3) in the story of my wife.

Contributed by Christopher Holt

Cassandra is doing better. Trying to talk more. Frustrated that we don't understand more of what she is saying.  She rolls her eyes when she gets tired of trying to make us "get it".  Funny! She is much more alert and aware.  Of course with that also comes more emotions and more concern over what is happening to her.  She is working really hard with PT. She is very determined and makes fierce faces as she makes the best effort she can. Her sense of humor is manifesting itself more. We still don't know when we will be out of ICU, but her blood pressure is now in the range they want it and so we are hoping it will be soon. We appreciate all of the thoughts and prayers we are receiving. We feel the power and sometimes it is the only thing that gets us through. Thank you seems insufficient.

Contributed by Amy Lilly

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

And the Earth Stood Still – January 16, 2013

Life is fragile. On Wednesday, January 16, Cassie was admitted to Utah Valley Regional Medical Center. That morning she was completely fine and exhibited no symptoms of anything being amiss. Well, around 8:20 AM she texted me saying that she was feeling a little weird. Since I was at work, I was able to finally contact her a bit later and she was crying and was not quite sure what was going on. Her speech was mostly incoherent and I assumed it to be due to her state of mind and her obvious crying. Well, she said that in the middle of class that her hearing and her ability to transcribe suddenly disappeared, only to return before class ended. It freaked her out and rightly so, but when she called her doctor that is when she discovered that her speech was not functioning as well either. The doctor said to take some Tylenol and drink water constantly.

After an hour, and much confusion and fear demonstrated by Cassie and another conferral with her physician, we went to the emergency room. Cassie was scared and did not know what was happening to her. Due to her symptoms, the stroke team came and did some tests and it was determined that she had a blood clot in the left side of her brain. So, my dear sweet wife, who is only 23 years old, has had a stroke. This was totally unforeseen (naturally) and it has been difficult to deal with. The first day was a whirlwind, as she had tests and MRIs and high hopes that we would be soon done with this. As Cassie was in with the physician, we waited in a room off the operating room for what seemed forever. The first thing tried was an IV drip, which did not work. The second was through a catheter in the groin in an attempt to drop some medicine directly on the clot to try to dissolve it, which worked until it clotted again. The final attempt was to manually withdraw the clot, which mostly worked until some dissipated and broke loose.

That night it was determined she would go to the Neuro Shock Trauma ICU to ensure her safety as she was in a critical state. My Dad was still on the road, but the rest of the immediate family was there. We had a prayer and placed our faith in the Lord that things would be alright. Most of the family stayed until midnight, and it was difficult for anyone to leave. Ryan and Maritza Magoffin came to see her that night, and they were wonderful as they brought me some food, took the extra car home and returned with bedding, toiletries, clothes and other things I might need. Right before midnight, they came to do another MRI and so I had to go with her and wait. It just breaks my heart to have had to look at her in all her misery and inability to do much for herself. I spent the night and only rested for a couple hours. Understatement of the year: it was a rough night.

Contributed by Christopher Holt