Just Another Day

After Ashtyn’s second trip to the ICU exactly two weeks ago, I wrote, “from now on I will constantly be on high alert with her. My eyes are more wide open for when her body does something out of the ordinary. My heart is more open to when I feel things aren’t quite right.” That philosophy paid off, though there is always more to learn.

For the past few days there were slight and subtle changes in her health. Sunday her stomach started hurting her. She had chemo that day so I wondered if that was the cause. Monday her stomach continued to hurt off and on. Her heart rate started to increase ever so slightly. Tuesday her temperature was higher, though still within normal limits. Wednesday her heart rate was a bit high, temperature remained on the higher end of normal, but nothing to cause alarm.  Though she appeared stable, I felt uneasy.  I asked for them to test her for C-Diff even though there were no signs of it other than occasional stomach cramping. The test came back positive. I continued to be on edge and wondered if I should leave the hospital to take Chandler to dinner while Jason sat with Ashtyn. With tears in my eyes I voiced my concerns to a staff friend. I was reassured that she would be fine and would be looked after.

Thursday started out normally. Ashtyn slept in until 11 am. Upon waking up the staff informed her that she needed to drink 3 cans of rootbeer with contrast for a CT scan. Ashtyn was up to the task and started drinking at noon. By 1:45 pm the rootbeer was in her stomach and she was ready for her CT scan. I looked at her arms and noticed a mottled appearance. Mottling happens when blood vessels change in the skin causing a patchy appearance. I didn’t like what I saw. I pointed it out to the nurse who immediately took her blood pressure. It was 108/38. Not good. The “108” is perfect but the “38” should have been greater than 50. Little did I know that the wide spread in the two numbers is a beginning sign of septic shock and occurs when the blood vessels dilate in a response to illness. A high heart rate is another sign they look for in septic shock. Her heart rate was 130. I immediately posted on Ashtyn’s Army facebook page, “Prayers are needed for Ashtyn right now. She is showing beginning signs of septic shock with low blood pressure, high heart rate, and mottled look to her skin. What’s going on? Let’s pray to find out. Please pray that the cause of this illness will be discovered and all necessary actions will be done.”

The doctors started an infusion of 1 liter of fluids. Afterwards her blood pressure was lower. Wrong direction. They gave her another liter of fluid. In the meantime she needed to go to the bathroom. Since she had a decent top number on her blood pressure, I took her to the bathroom. She felt completely fine and got in bed afterwards. A few minutes later she looked at me, “Mom, I feel weird.” The resident was leaving the room. “Stop.” I told him. “She is feeling weird.” Ashtyn again said, “Mom, I am feeling really weird.” Her eyes rolled to the back of her head, she lost consciousness, and her lips turned blue. I asked the nurse and resident to call a code. They couldn’t find the code button because it wasn’t behind the bed but rather behind the med cart. I ran into the hall. No one was there. I ran down the hall. No one was there. I started yelling “Call a code! Call a code!” A code was called and then canceled before I got back to the room because, in the meantime, Ashtyn woke up and became alert. She was then watched over constantly by doctors until they were able to take her down to the pediatric ICU.

By 4 pm she was in the PICU and everything was calm. Additional antibiotics were started, IV fluid continued to infuse, and vital signs were taken every 15 minutes. Everything looked great. Her blood pressure was completely normal without the need for blood pressure medication. Why was her body able to maintain a good blood pressure at that point? Why were signs of vasodilatation gone? There was no answer to the questions. From then on out, her blood pressure remained normal the rest of the night.

Ashtyn PICUAshtyn PICU

How was Ashtyn during this entire time? Calm, quiet, brave, and she just went with the flow. Initially when she realized we were concerned about her blood pressure she said, “let’s just go to the PICU. I’d rather that than sit here and wait.” Other than that, she didn’t have a lot to say. Once in the PICU she just wanted me to sit with her and rest while all the staff did what they needed to do. She went on facebook and was excited that “Cloudy With a Chance of Meatballs” is coming out with a sequel. I had to leave the room for shift change, based on the PICU rules, and was gone from 7:15 to 8:00 pm. Ashtyn asked me to go to her room and bring back nail polish and The Cosby Show, 5th season. I got a few texts from her while I was gone. “They are going to see if I can do a CT scan.” “They are sending contrast down. Two cans of rootbeer.” Ashtyn truly was at peace the entire day, as if it was just another typical day at the hospital. Having a calm spirit makes all the difference.

At 9:30 p.m. Ashtyn was wheeled to the CT scanner to look for fungal infections that might be hidden. They did IV and oral contrast. Immediately upon completing the CT scan, a surgeon walked by the pictures and noticed right away that she has colitis. He came right into the room and informed me that colitis is dangerous, especially for individuals who have no white blood cells. Colitis is an infection and inflammation of the colon. The risk is that it could perforate, causing a hole in a portion of the colon, requiring surgery and a high risk of infection. His suggestion was for her to not eat for 10 days, rest the colon, and fight the infection with antibiotics. Ashtyn was so sad to hear she won’t be able to eat for awhile. We were looking forward to eating good food while watching LDS conference this weekend. Not eating will be tough and she will need lots of prayers for her stomach and colon this week.

Ashtyn CT Scan

What an amazing day. Miracles. Blessings. Tender mercies. I am grateful that Ashtyn’s unstable blood pressure became apparent right before heading down to the CT scan. I’m grateful it occurred in her room rather than in the halls. After fainting in bed, I am grateful Ashtyn regained consciousness. At first I felt dumb about calling a code. However the charge nurse assured me it was the right thing to do and to be grateful that Ashtyn pulled herself out of it. Once in the PICU, I am grateful her blood pressure remained completely normal. There is no explanation for that. I am grateful that the PICU nurse questioned the doctors, wondering if they still wanted the CT scan since Ashtyn was stable. Without the CT scan, we would not have known she has colitis. She would have been allowed to eat, which wouldn’t have been the best for her. During all of this, the staff on the floor called to tell me that there were new kids coming to the hospital and they needed Ashtyn’s room. “Are you kidding me? You need me to move all of our stuff out of her room to my car even though she will likely go back to the floor tomorrow? We have so much stuff but I totally understand the staffing reason. I will be right up.” So I started packing up her room. Before it was all packed up, I was thrilled to hear that another option was worked out and I didn’t have to move our stuff out of the room.

Ashtyn was blessed today. I am so grateful that she was diagnosed with colitis so she can now be treated properly. I am grateful for her calm spirit. I am grateful Ashtyn felt peace and comfort today.


7 responses to “Just Another Day”

  1. Sending prayers and hoping you both will enjoy the blessings of conference. Your story is one of amazement and inspiration. We love you!

  2. Thank for sharing such tender situations and thoughts with us. I think many, many people are reading your words and are being inspired. I will pray.

  3. Wow, amazing story suzanne. The subtle warning signs of infection remind me of our preemies. What a blessing your experience in the NBICU is! The Lord prepares us for unseen trials and you have surely been prepared for this mission as Ashtyn’s mom. He has a plan. He is in control. Ashtyn is in His gentle, loving hands.

  4. It’s scary to think that Ashtyn has an infection with no white blood cells to fight it but I know she is in the good hands of The Lord. She is a strong girl and will get through this.

  5. I hope Ashtyn feels better! My family and I are praying for her, though we do not know her. Prayers for Hawaii! 🙂

  6. Hey Ashtyn,
    Prayers are being said in my family! We are praying mostly for the colitis to go away quickly and for you to be out of the hospital soon. I am very grateful for what God has given you over the past few months: A caring and kind family, great doctors and staff, and an amazing army behind you! You have gathered more people to help you fight cancer then Justin Beiber has in a year! You are strong and an amazing person! Keep fighting! I love and miss you!