On March 15th, Ashtyn was devastated to go back to the hospital after only being home for four days. “Why do I have to be here? Why can’t I do the chemo at home? I feel fine!” Every day Ashtyn asked when she could go home. I explained, “You need to be in the hospital in case you react poorly to chemo, get sick, or something happens. I will fight for you to go home when it is the right time but it is not the right time.” For the past three days, Ashtyn stopped begging to go home.

In my last post I mentioned, “I know each day can change in an instant” and it did. Friday morning she woke up and immediately texted her uncle Jared asking him if he would bring her Indian food, strawberry shortcake, and eat dinner with her. She then ate breakfast, watched TV, did physical therapy, and rested in bed. Her body is generally weak and able to do only a minimal amount of activity before she wants to collapse. The “easy” task of raising her arms above her head or doing 20 squats is actually extremely painful and quite difficult. She was eating, her vital signs were stable, and she seemed comfortable so to me she was doing pretty well. At 5 pm it was time for her bath and central line dressing change. She had just finished physical therapy, “just give me 10 minutes to rest.” However she never woke up or felt well enough that I was comfortable forcing a bath or dressing change. She was exhausted and extremely nauseated. The nurse gave her IV medication every 2 hours to try and help with her upset stomach. What had always helped her nausea in the past was not helping at all. Why was she so sick to her stomach? Her vital signs were stable though I didn’t like the vibe she was giving me. I talked to her nurse about how Ashtyn has become a girl whose health can change suddenly. I explained, “when friends or family members ask to come visit her in the hospital I always tell them to please text me an hour or two before coming because I never know how Ashtyn will be feeling or behaving.”

At 7 pm Jared and Nanette brought her the Indian food and strawberry shortcake she had been looking forward to but she was not interested in food at all. For days she had been constantly hungry while taking the medication dexamethasone, but now had no desire for food. She hardly socialized with her visitors and continued sleeping.

At midnight Ashtyn woke up, “Mom, I don’t feel well at all.” I immediately got in bed with her and noticed right away that she was feverish. Her temperature was 102.5 with a red, flushed face. The nurse took her blood pressure and was unable to get the bottom (diastolic) pressure…it was too low. As she left the room to call the doctor, Ashtyn needed to go to the restroom. I walked her to the restroom. On the way back to her bed she stopped walking and felt strange in my arms. “I need help” I said. She continued walking a few more steps and collapsed in my arms. The charge nurse opened the door and with one look at Ashtyn he called out, “Code.” “Yes! Call a code.” I responded. As I was trying to get my noodley daughter in bed I heard over the loud intercom, “Code Blue 4403. Code Blue 4403.” Simultaneously, Ashtyn woke up, I laid her in bed, staff members poured into the room, and she called out to the empty corner, “Grandma!” I held her hand with my face close to hers while vital signs were being done, blood was drawn, and IV fluid poured into her central line. A doctor asked her questions, “What is your name? Do you know where you are? How old are you?” She knew the answer to the questions. “Mom, are you nervous?” This was the same question she asked me on February 17th when we were going through the same thing. “No Ashtyn. I am not nervous. You are going to be fine.” And the honest truth was, I wasn’t scared. With the code team there, I had complete comfort knowing she was in great hands. They were doing everything that was needed to help Ashtyn. I was so grateful they were all at her bedside. I was so grateful I was at the hospital. I was grateful she went to the restroom at the time she did and passed out, giving us a clear sign that she needed immediate intervention to help increase her blood pressure and blood flow to her brain. I was grateful she was going to be monitored in the Pediatric ICU until she was stable.

Her bed was soon pushed through the halls, into the elevator, down to the 2nd floor, and into the PICU. Once in her room, more fluids were given to try and increase her blood pressure. It was soon apparent that norepinephrine was going to be needed to maintain a decent blood pressure. Her initial blood pressure during her “code” was 63/15. A normal blood pressure for her is around 100/55. Norepinephrine causes vasoconstriction, narrowing the blood vessels and increasing blood pressure. Antibiotics and norepinephrine were started. Ashtyn laid in bed completely alert and completely brave. The most unpleasant thing for her was throwing up every 20 minutes for about an hour, “I hate this.”

By 4 am everything had settled down and it was time to sleep. I slept on a chair that reclined flat. Ashtyn slept in her hospital bed with fluids running though her right hand peripheral IV, and medications and fluids running in her broviac central line. She had a blood pressure cuff on her left arm taking her blood pressure every 10 minutes. Her oxygen saturation monitor was wrapped around her right thumb and three EKG leads were attached to her chest. There was one nurse watching over her monitors at all times and numerous doctors and staff at our disposal if needed. I fell asleep without any worries.

Saturday was spent in the ICU weaning her off norepinephrine. By 8 pm she no longer needed medication to keep her blood pressure normal. Her biggest worry? When were they going to let her eat? She was starving all day. By 8:30 pm they finally allowed her to eat.

Is she sick with a bacterial infection or did she have a reaction to a chemotherapy drug given 10 hours prior? It is yet to be decided. Tonight we talked about the ICU experience. I asked her, “why did you ask me if I was scared?” Her answer, “Because if you are scared, I’m scared. The only thing that was scary was when they started the IV. I felt God was near the entire time. Throwing up sucked though, but He was still there. I just want to go home for Easter. It is my favorite holiday. Even if I can only go home for one day, I will be grateful for what I can get.”

“Each of us will face trials and tests. It is how we react to those difficulties that will determine our success and happiness… I realize that it is much easier to look back when a trial is over and see what we have learned from our experience, but the challenge is to gain that eternal perspective while we are going through our tests.” Elder James B. Martino