Yesterday, Callie graduated from intensive care to the step-down unit. Callie’s lungs sound clear and her doctors think her sickness has resolved.
Now we’re left with SMA.
Several times over the past few days Callie’s blood-oxygen level has dropped and remained too low, despite having breathing support from bipap and oxygen and despite the fact that her lungs are healthier now than they were a week ago.
This is happening because SMA has weakened Callie’s body to the point that fighting a cold leaves her unable to inhale and exhale regularly.
We hope a few days of rest will give Callie back the reserve strength she needs. If she is not able to regain the strength she had before she woke up with a runny nose on May 26, she will need more support from bipap and oxygen indefinitely.
We will be discussing Callie’s short and long-term needs in a couple of days with some of her doctors at Duke. We still hope she’ll be able to come home from the hospital this week.