BMT Day 21

Yesterday and today have been relatively calm from a stability standpoint though Ashtyn continues to have a 1:1 nurse dedicated to only taking care of her and is kept busy the entire day. Reasons Ashtyn is still in the Intensive Care Unit: 1. Her lungs still have fluid and/or an infection requiring high flow oxygen. (15L 30% O2) 2. Complex fluid balance issues and trying to keep her kidneys happy is an ongoing battle. Ashtyn requires approximately 30 IV medication infusions on top of continuous IV nutrition. It’s not as simple as whatever fluids she’s given will equally be urinated out. Her body retains fluid in tissue spaces which required her to go back on a continuous diuretic Lasix to help get rid of the fluid. One downfall to Lasix is that potassium leaves the body with the urine making her potassium levels low. Abnormal potassium levels are dangerous to the heart. When continuous Lasix is given, IV continuous potassium has been needed which requires every two hour lab draws to make sure potassium is at a safe level. Fluid and electrolyte balance, IV medication administration, and kidney care is really complex to monitor and manage especially when many of the medications she needs are very hard on kidneys. She requires a total of about 45 scheduled IV plus feeding tube medications as well as insulin and blood products when needed. Emotionally she seems to be very calm, patient, and comfortable. I see baby-step improvements everyday as she is slowly becoming stronger and more alert. She is still in a diaper and wears a gown. Her muscles are way too weak and tight to even stand up. When throwing up, she gives little warning and can not be trusted to protect her airway completely without someone sitting her up, making her lean forward, holding the barf bag, and talking her through it. I suspect as we continue seeing improvements we’ll also start seeing her become more independent in the coming days. The Next Big Steps and prayers needed: 1. Continual lung and kidney improvements. 2. I hope soon she’ll be strong enough to swallow pills instead of using a feeding tube. 3. Her body is quite deconditioned. I hope she can begin gaining strength and mobility. 4. Engraftment would be amazing!!! I hope to see white blood cells in her blood soon indicating engraftment day is approaching.