Looking back at the pictures of Ashtyn during the last two weeks, to me they don't convey her level of sickness. When Ashtyn went to the PICU in septic shock, she became completely dependent on a breathing tube and medications to stay alive. She got off the ventilator and started to breathe on her own with the help of 4 L of oxygen given in her nose. She is now down to 1.0 L of oxygen. At her sickest, Ashtyn could not open her eyes. We were so excited the first few days she would open them, even when it was only for a few seconds. I would ask her to please open her eyes. With my camera ready I would fast burst so I could catch a picture with her eyes opened. Her eyes are now open every time she's awake. Ashtyn couldn't talk for awhile. When she did start to talk we couldn't understand a word she said. I would get real close to her face, concentrate on her lips, and try really hard to make out what she was saying. Once in awhile I'd understand a word or two but not much. She was also disoriented, not really able to distinguish dreams from reality. Each day Ashtyn gets better and better at talking. I remind her to slow down her speech and enunciate each word at a time. I can understand her so much better today. Since getting really sick, most of Ashtyn's days and nights were spent sleeping or trying to sleep. She would lay on her back with the head of her bed slightly elevated. Her butt started to have skin breakdown so we've used pillows to try to get pressure off her back side. Sometimes she would want to sit up to cough or throw up. I would have to sit her up and then help her back down. Just today she started sitting up on her own and sleeping in different positions. She's definitely getting stronger. As you might imagine, Ashtyn is too sick to realize or care when she has to go to the bathroom. She wears a diaper that I change about every two hours. This to me is one of the biggest indicators of how sick she is. My modest, independent almost 16 year old doesn't have it in her to care that her mom and nurses clean her. She has a bedside toilet for when she is awake and well enough to use. That time is coming. Ashtyn's been too weak to walk since being in the PICU. Sometimes she'll move from her bed to the toilet, to a wheelchair, or to a chair. The process of her getting up includes me helping her sit up in bed and swing her legs to the side. Then I encourage her to scoot until her feet touch the floor. Her arms lightly go on my shoulders while I wrap my arms around her back and slowly help lift her to standing. The farthest she's walked is about 17 feet to her shower. It took two people walking with her to make sure she didn't fall. She did awesome and it was a big accomplishment. She hasn't eaten for twelve days. For nutrition Ashtyn is given IV nutrition called TPN and lipids. Two days ago she started feeling thirsty. She likes Gatorade, apple juice, chocolate milk, and root beer. I have had to hold the drink for her as she sips through a straw. Yesterday was a big day! At 7:00 pm she asked for a root beer slushee, which the cafeteria doesn't have so we ordered a root beer float instead. I actually didn't think she'd eat it but it was worth a try. Once it got to the room I fed her a bite of vanilla ice cream. Ashtyn's not an ice cream girl but she loved it. After feeding her one scoop she got upset because she wanted to feed herself. With very weak and uncoordinated hands, she held the cup and ate the last scoop of ice cream. This weekend she will have minimal procedures and medical tasks to do. It will be the perfect time to strengthen her physically and emotionally. It's obvious Ashtyn needs to shave her head. I brushed clumps of hair out for several days and she doesn't have much left. She's been too sick to care or even notice. Shaving her head is a big deal. It's a day that emotionally she has to let go of any appearance of normal health and succumb to being a cancer patient fully. It takes a lot of courage and strength to shave your head. Currently Ashtyn isn't alert or herself enough to do it. Her hair will stay the way it is until she is well enough to look in the mirror and make the decision to let the hair go. In the last 24 hours her progress has been so amazing to me. She's getting there.
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