Ashtyn feels terrible, sick, and achy. Though we can’t see with our own eyes how depleted her body is, she literally “feels like my body is getting the blood it needs but my bones are empty.” I know she feels awful but from my perspective, we could not ask for anything better right now. She sleeps around the clock other than waking up about every 3 hours to go to the bathroom. I appreciate the fact that she can basically sleep through the misery. Not moving her body though can cause some serious problems. Whenever she wakes up I get her to do a few activities such as oral care, bed bath, physical therapy, stretching, range of motion etc... always including lung exercises with the incentive spirometer. She has about 20 minutes worth of the weakest endurance and then she goes back to sleep for another 3ish hours. Today IV nutrition (TPN and lipids) were started. She was so good at forcing down protein drinks for calorie needs but her gut couldn’t absorb properly. Walking is no longer possible because of weakness, pain, and the variety of sedating drugs. At this point she’s basically bed bound other than moving to the bedside commode. Even though she feels awful when awake, there is a constant peace and calmness that fills her room. There is so much to be grateful for. She sleeps restfully and deep. Some of the kindest hospital staff are working so hard to keep her safe and healthy while others take time to stop by and say “Hi”. We feel loved by everyone at the hospital and are never lonely. Please pray that 1. pain and misery will remain manageable. 2. her transplant will engrafted timely and properly. 3. her body will stay infection and complication free with minimal bumps in the road.
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