Ashtyn spends all day in bed, sometimes sleeping sometimes fully awake. Delirium is getting much better where there are clearer moments than others. She is completely calm with her current situation and at the same time unusually annoyed by me. I spend a lot of the day changing her diaper at least every 2 hours, encouraging her to do lung exercises, positioning her legs so her knees aren’t bent all day (which would make it impossible for her to straighten her legs when her body is ready to start standing), and encouraging her to put special boots on that help stretch her calves (so she won’t walk on her tippy toes when she begins to walk again). I understand why I’m irritating to her but I can’t help it. “I love your lungs (or legs) so much that I have to be annoying.” She actually doesn’t talk much and when she does it’s very short requests or short answers.
All in all there is definitely progress being seen. Her lungs are still a concern and great care is taken to not push them over the edge. She remains on oxygen. She started in the ICU five days ago needing 40% oxygen 15 liters high flow and is now down to 25% oxygen on 10 liters high flow. Aspirating liquid into her lungs is a risk we have to avoid so she’s only allowed to drink thickened water. She loves ice chips but her doctor feels the melted water could go down into her lungs without us knowing so it’s been asked that she not eat them. It’s a difficult balance for me as her advocate because I understand the grave risk of having water go into her lungs but I also want her to be comfortable and have as much quality of life as possible. I asked for speech therapy to assess her swallowing skills today. It was decided that she can swallow pills with pudding so doesn’t need an NG tube anymore. She can continue drinking thickened water, sprite, or really anything she wants. Her vigilant and caring BMT doctor is adamant about holding off on ice chips until we know she is safe to drink normal thin water. I think the option to drink whatever she wants as long as it’s thickened and can pull her NG tube out are great compromises for not letting her eat ice chips.
Recovery is projected to take awhile so Ashtyn will continue needing IV medications and fluids for weeks to come. When healthy, she is encouraged to drink 67 ounces a day to keep her kidneys happy. Currently she is receiving 200 ounces a day. Every effort is made to minimize the amount of fluid given but all the medications and infusions her body needs simply add up to more than ideal. Her heart and lungs are negatively affected by too much fluid so balancing everything and keeping organs happy will be a priority for awhile.
At this point we are happy for stability and the small improvements seen each day. We are still waiting for white blood cells to show up in her blood labs indicating the beginning of engraftment. A healthy engraftment is the entire purpose of a bone marrow transplant. The average day engraftment occurs for an umbilical cord transplant is around Day 28, give or take a week. Please pray that her new marrow will engraft ASAP.
Check out that IV pole! 12 IV pumps
Taking pills with a little bit of pudding.
Tight calves??? Not on my shift.
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