Lots of emotions go into one single day at the hospital. Tuesday October 25th: Morning: started with Ashtyn wanting me to get in her bed and hold her in our classic comfort position. The head of her bed inclined, me sitting on a 120 degree angel while Ashtyn sits in front of me, between my legs, and lays back against me. Her stomach hurt and wasn't feeling well at all. Ashtyn was told she needed an nasal gastric tube (a tube that goes in her nose and down into her stomach. It would then infuse formula into her stomach.) She has a history with NG tubes from her previous cancer diagnosis. Getting them inserted is a nightmare for her. Once in, the tube just makes her depressed. After getting bummed about the tube for a little while she asked, "Can I just eat the calories myself and not get the tube?" With the understanding that her energy is low and she hadn't eaten in 10 days, the determination was there to do all she could to not get that tube placed. The rest of the day she sipped on chocolate Carnation drink. She probably drank close to 1,000 milliliters. Not bad for her first day. Afternoon: Recovering is hard work. Lungs need to be strengthen: Ashtyn's suppose to do breathing exercises. Muscles need to get stronger: Physical and Occupational therapy encourages muscle strengthening exercises and flexibility movement. Nutrition is important: She's often asked to drink "one more sip" of her Carnation drink. Even the basic task of getting up to the bathroom is a chore. She noticed, "A few weeks ago I could walk upstairs. Now I can't even walk one step forward." Hygiene: She's suppose to do oral care four times a day and get a bed bath or shower every other day. There's never a shortage of tasks to do and healthcare providers coming in and out of her room. Evening: Ashtyn was moved to the cancer floor after nine days in the ICU. Even though she was very happy to leave PICU, anxiety kicked in. There is so much going on in her body and around her that she is over stimulated. Night: Ashtyn had a temperature of 102 degrees. A blood culture was drawn. There's really nothing we can do for her fever. She's already on large spectrum antibiotics. Tylenol hasn't been helping to bring it down. We ended the day like we started it. Ashtyn wanted me to get in bed with her. She's feeling anxious and awful. At 2:00 a.m. she laid in front of me, I held cool cloths on her forehead to try to decrease her temp. At 3:00 I laid beside her trying the ease her anxiety further. At 4:00 am she still couldn't sleep. It's 5:00 am: Her temperature is gone but she's still restless, anxious, and unable to sleep. They say that ICU's can really mess up ones psyche. I would say that's the case with Ashtyn. Nights are rough and we are doing all we can for her. All in all we are still three steps forward so I can't complain. God is good. Prayers of the day: 1. For her liver. 2. That her nights will improve with less anxiety and more normal sleep. 3. That her appetite and ability to eat will increase. 4. Her doctors and nurses will be inspired to know when there's a red flag that needs to be looked into. **Ongoing prayers that she will remain healthy and get into remission as soon as possible**
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