Rollarcoasters

We just finished up BMT Day 28. No white blood cells have been seen in Ashtyn’s labs yet. It’s not good for a body to be without neutrophils and every single day without them is risky and not ideal. She’s past the point where cells were expected to be seen so we continue hoping and praying for engraftment to happen real soon. I do think everything else is going surprisingly well despite the ongoing neutropenia. In a matter of 24 hours she went from wearing a gown to wearing normal clothes. She feels more energy and wants to do some normal things so she sits in a chair a couple times a day and gets up to the bedside commode. Her kidneys are doing better as well. Unfortunately oxygen is still needed, currently on 2 1/2 to 3 L. When in a deep sleep she continues to have episodes of shallow and absent breathing which drops her oxygen saturations and sometimes her heart rate. Until a sleep study is done tomorrow, the only thing that possibly helps is using a neck roll to hyperextend her neck and chin while sleeping. She’s a back sleeper, a habit from being in the hospital for years, but tonight I’m encouraging her to sleep on her side to see if it makes a different. I’ll let you know.

The entire Labor Day weekend, Ashtyn had two nurses taking care of her during the day because one was training. They gave her so much attention, making sure her medical, physical, and emotional needs were taken care of. The pressure on me was greatly lightened which gave me time to feel the intensity of the past 6 months. I was physically and emotionally exhausted. I slept in on Labor Day until noon. I then cried to the nurses, my parents, Marco Polo’ed a friend, and vented to my brother about the rollercoaster. There seems to often times be huge ups and downs, and quite honestly I’m tired of it. Currently it’s wondering when and if she will engrafted. There are also smaller rollercoasters like the weekend battle of limiting what she drank to help fluid balance and aspiration precautions while at the same time providing quality of life with her want for ice chips, water, and food. There are also moderate rollercoasters like the current sleeping problem when she breathes shallow enough that her oxygen saturation’s drop. It’s difficult for me to only complain because there is always calm and good too. She is physically stronger, emotionally hanging in there, viruses are being kept in control, does not have a dreadful fungal infection, is completely alert, well enough to get up to the bedside commode, can stand, not in pain, calm stomach, and continually surrounded by healthcare professionals that dedicate each day to serving her. God bless the hardworking, competent, dedicated, protective, loving, thoughtful, unselfish, and kind staff at Seattle Children’s Hospital. Please pray for 1. engraftment 2. absence of sleep apnea 3. improved lungs 4. the hospital staff that they will be blessed for all the good they do.