Saturday night… I mean Sunday morning I went to bed at 6 am, after a busy night helping Ashtyn. At 7:00 am I woke up to about 10 different medical staff surrounding Ashtyn’s bed moving very quickly. I could sense there was worry in the air. As I watched the organized commotion, I gathered that her blood pressure was low and they were doing all they could to get it to stabilize. 60 ml after 60 ml of fluid was pushed into her Broviac central line. A total of 1080 ml was given to her in a matter of 10-15 minutes. Her original blood pressure was 103/20. The lower number (diastolic) of 20 was very concerning. A normal diastolic pressure is around 65. At 20, Ashtyn was unable to perfuse oxygen to her brain. I could feel panic surfacing. Is Ashtyn going to be OK? Is she going to make it? I quickly felt calm remembering what I know to be true. God is in charge, He is watching out for her, He has a plan, and with everyone’s faith and prayers she will be OK.
By 7:30 am we placed a mask over Ashtyn’s mouth and wheeled her bed to the Pediatric ICU and placed it in a room with closed doors and no windows. She was given norepinephrine to keep her blood pressure normal. “Mom, I want to go back to the other room.” Me too. I asked the doctors what their best case scenario was of getting her back to her room. They wanted to observe her for at least 24 hours. Like Ashtyn, I had an immediate appreciation for her hospital room with my comfy couch bed, instead of a chair, and all of Ashtyn’s Army decorations. I sent a Facebook message to Ashtyn’s Army “Ashtyn’s blood pressure dropped this morning. She was moved to the pediatric ICU for monitoring. Please pray that the medical staff will figure out the cause. Pray that she can recover quickly so we can return to her home away from home hospital room.”
The doctors’ and the nurse practitioner approach was that she had an infection until proven otherwise. My approach was that she had too much morphine in her body until proven otherwise. As I sat beside her I was so grateful for God’s hand in Ashtyn’s daily life. At the time her low blood pressure was detected, she was getting her second unit of red blood cells transfused. During the beginning of a transfusion blood pressure is taken every 15 minutes. Other than a blood transfusion nurses generally take her blood pressure every 4 hours. The PICU took blood tests and decided she didn’t need that second unit of blood. I am grateful that her blood pressure dropped at a time that she was being monitored very closely. Because of that blessing, I know her blood pressure wasn’t low for long and her brain was not compromised.
As the hours of monitoring went on it became apparent that she was overdosed with sedatives and pain meds. Not overdosed because of the medical staff, but overdosed because her body was unusually sensitive to what normally is given. By 4 pm Ashtyn was stable enough to go back to her room. Another miracle because of the prayers of Ashtyn’s Army.
Ashtyn’s day continued to be a struggle. Since she was overdosed with medication, the staff did not give her any medicine for nausea or pain for 12 hours to help her not be so out of it. Because of that, she became very nauseated and threw up often, though there was nothing to throw up. The antibiotics were also affecting her to where so had to go to the restroom a lot. She was uncomfortable, restless, and unable to sleep well.
Her hair was a matted mess. I asked Ashtyn if I could brush her hair. She wanted to do it herself. As she brushed her hair my heart sank in despair and anger for what she is going through. Why is it that I can watch her sick and in pain, but when I see clumps of hair coming off her head, it hurts me deeply? It makes me sick to my stomach. She has lost so much hair, I suspect it won’t be but a few more days before it will all be gone. I wanted to validate any feelings she may have about her hair loss. “Ashtyn, do you know what makes me mad? That you have to lose your hair. It’s very sad. Does it make you mad?” She nodded her head, but then shook it, “I can’t think like that.” Her comment pierced me. She was telling me what I have been teaching her for years. Be positive. There is no point in ever stewing over something you have no control over. It is so much more productive if we push out the negative and focus on the good.
Tonight Ashtyn asked me how long she gets to be home when she leaves the hospital. I haven’t had the chance to tell her that when she goes home it won’t be for good. She figured it out. The girl definitely listens to conversations around her bed. I told her she would be home for about 1 ½ weeks and in that time we can do whatever she wants to do. “Do you want to go home or go to Disneyland.” She thought about it, “Disneyland.” I asked, “How long do you want to be there?” Her reply, “As long as possible.” I gave her the idea of going to Disneyland for 5 days and home for 5 days. She thought that was the perfect idea. “Do you want to go to Disneyland first or home first?” After careful consideration she said, “I want to go to Disneyland first so that there is no way they’ll make me come back to the hospital.” I understood. She would have a fear the first couple of days of being home that the doctors would make her go back to the hospital early for one reason or another. Ashtyn has always been very intuitive of knowing how to cope emotionally.
Ashtyn has been handling her hardship with such dignity and grace. She remains nice to me and the staff even in her toughest moments. Her determination never seems to fail. I told her tonight, “Ashtyn, tomorrow will be a better day.” “Mom, you told me that yesterday.” “Well Ash, I think it will be. Do you?” She nodded her head.