Day +2: Kiira was still sleepy today but she didn’t get quite as much sleep with constant interruptions and bandage changes. She cracked a few smiles, and spent a little time playing and sitting on my lap. Kiira’s sisters visited today and they spent time with a Child-family Life rep, who taught them about Kiira’s central line and they made “blood soup” to show the difference between healthy blood and Kiira’s. It was really good for them to experience that. We also attempted a slow drip feed with milk into her gtube tonight and she is tolerating it so far, so that’s an added improvement from the last 36 hours. We know Kiira will have ups and downs, especially over the next 2 weeks.
We learned that Kiira’s skin might see dramatic improvement over the next 2 weeks due to the immunosuppressant drugs she is taking, which is odd, but is because they reduce inflammation in her skin. However, once we back off those medications, her skin will likely go through a blistering phase and it will take 6-12 months to know how well this BMT will work for Kiira. I wish for a quick cure and healing, but I have to keep reminding myself that this is a long process, a true test of my patience and emotional stability.
So far Kiira’s response to the BMT is normal and there’s no cause for concern, and with the amazing nurses and doctors, I feel at ease. Even though I see tears roll down Kiira’s sweet face, I know a day is coming where she will smile again.